The Shame of Ireland
A MOTHER’S LOVE IS A BLESSING
For a young girl raised in the charismatic north-side of Cork city in the late 70-80’s I can say, with great truth, that I had a fairy tale childhood within a very large, close and loving family. I had parents that did everything they could to see us well fed and dressed – a fierce task in hard times with nine children. Being the third youngest of nine, I know that I hadn’t a care in the world then, as it was my mother that did most everything, from dawn to dusk in a seemingly grinding cycle that she relied upon and enjoyed immensely, while my father worked to provide. A tower of strength the pair of them, still is to this day (and many more god willing), Mum rose early each morning to greet us – in the winter it was with a smile, a blazing fire, hot toast and the smell of my father’s coffee in the air and in spring we returned home from school to the sound of her singing and the sight of her brisk cleaning.
Yes, my childhood, a wonderful place to. And then…in one moment…it was all over. One sad, hot, and summer night in ’85, as five of us sat huddled together watching TV, my brother Jimmy had his life cut viciously short. Whilst playing with friends, he fell through a roof. He fell forty feet to his death. He was only sixteen years old. Jimmy and a gang of friends of his had decided to chase pigeons. They had entered a property, close to the Mercy hospital about three minutes from our little home. They had all climbed up the building and made their attempts at capture but when this failed to stem their boredom, they decided to leave. One of the boys yelled ‘Last one down is a rotten egg’, Jimmy jumped to the next roof. It collapsed and he fell with it, through many floors, no doubt screaming for his mother. He broke most every bone including his skull and had extreme internal fatal injuries.
As young as I was at that time, nine years old, I knew instinctively it would be my mother, that would suffer the most and as I am now a mother myself; my own experiences have thought me the truth of this. How did she suffer but more importantly, how did she survive? I feel now, when looking at my own children, that I could never imagine being without them. Children are, to me, the fire in the core of the earth, the rhythm in thunder and the balm of rain to the scorched earth. For me, to have and cherish my own children, is a blessing tenfold because, as I was to discover, for me to have my children, I would have to know first what it was to lose them. A life-lesson, that was painful, bloody but worth every minute, no matter how hard it was made for me. As my understanding grew; I watched, along with my father him the engine my mother the fuel that was the machine which was once our happy family, as my mother struggled with every new day. My mothers grief, would in time, in an extraordinary fashion become my shield of protection against all that life would throw me.
The depression that consumed my mother was horrific. It was unbearable to watch and I know now to have been her or any parent, losing a child it’s just incomprehensible. Sadly, the effects of the treatment she received could not be denied but in those days, we did not know or understand drugs and their effect. Neither, it seemed, did the doctors – when it comes to therapy and management of drugs and mental health, this country has come a long way but we still have not got it right. At a cost they can never be calculated, it so great. And these were the days when people smoked while waiting in a doctor’s surgery, when people suffering from depression were stigmatized and when whiskey was considered a cure! And on the other side these were the days when neighbours shared everything .When you could leave your key in the front door. These were the days when priest, doctors and teacher and the like were trusted and revered. Better days?!
For my mother, the cure seemed worse than the disease as severe weight loss, fatigue and a sharp mental decline ensued. This ‘medicine’ proved years later to be highly addictive and dangerous and was taken off the market- but the damage had been done. Upon removal of her medical crutch, my mother had to once again begin a downhill cycle of depression, which, I am pleased to report she eventually beat. She battled all, that came her way and because of her devotion to her family; she succeeded with the love and support of my father, though it took many years.
YOUR BEST FRIEND IS YOUR POCKET
As a teen, I was lucky to be popular and had many friends. But time and life would prove to me that of all of these friends, only one, Daisy would remain and become not only a friend but to me and the family I was about to form, she became our greatest caregiver and biggest hope. My parents had thought us all that ‘your only friend is your pocket’, and for me, other than Daisy, time proved them right. . I began to long to have space of my own, with no one to help or mind. I longed for my freedom. Oh how we suffer for the impatients of youth.
I remained in school where I met many unusual characters, as I suppose we all do. I have had teachers give me lunch, I had one who (wrongly) accused me of being a thief and I also had teachers who did not like me, nor I them. Then there was Ms C…I could not, in good conscience, complete this book without mentioning her. She was my English and Spanish teacher in secondary school and was very stern indeed! Unfortunately, and I laugh now, I had great difficulty in school with the rules of languages, including English. The first book I ever read and remembered was to kill a mocking bird. Miss C brought so much emotion to the classroom so you would not forget it. This is why most of the class hated English, but for me of all the classes it was from English and history I gained most enjoyment. While in constant fear and respect for Miss C. These other worlds and lives on paper were for me a great distraction from my own life. For all this I loved school, I felt safe there and feel it aided me immensely in my life, more so the teachers and their personalities, rather the education itself.
I clearly recall the sexual education class we were treated to. We were shown a condom, told what it was for and…well…that was about it. At the time too, I recall that we were all at the age where we found it more amusing than educational. As some myself included were long before the education in fact sexually active. The only other time sex or reproduction came up again was in biology class briefly and it was through this that we learned what went where and its namesake. Again, this lesson fell far short, I felt that even then. As I grew and developed myself, I would quickly learn the detrimental effects this had. At 18 I left home screaming and kicking for freedom and met the man who would eventually father my four children. Yes, it was love at first sight and three months later, nearly twenty years old, I was pregnant.
BETTER THE DEVIL YOU KNOW
As my pregnancy progressed, I chose to retain the services my childhood doctor. I knew of no reason to search for another. To be truthful, I would not have known that I had any other option; that is, until such a time came when I had to. At the time, I felt that if he was good enough for my mother, he was good enough for me. Even though I felt he was a bit old fashioned, I agreed with my mother when she said that it was ‘better the devil you know’. Anyway, I was not sick, I was happily pregnant. And it was a wonderful pregnancy. The fact that a little person was growing inside me filled me with copious amounts of joy and excitement every day. I tried to imagine its tiny face, so blissful in my naiveté. No matter your age, nothing can compare to the expectations that fill you with the birth of your first child. I might have been young but for this child I was completely prepared.
On the thirtieth of September 1996, I gave birth to my darling daughter, Emilia, a healthy six pounds, thirteen ounces. With the aid of epidural, when the pain subsided the rest of the experience I can only describe as beautiful. I delivered her just hours before her due date. She was healthy and strong and I breastfed her immediately. Later, as she slept, I could do nothing but gaze at her, utterly astonished that she was mine. I imagined how I would care for my child, my gift. I pictured myself doing for her the things my mother had done for me. I even dared to hope that I could give a little bit more, my mother having been burdened with pain the like I believed I would never know. How naive I was, happy and unafraid of what I could never have known was to come. I had made a promise to my tiny daughter and it meant so much to me, never realizing the one thing I feared for my daughter would be the one thing she would have to contend with in her life. A mother unable to care for her with the vigour I wholeheartedly intended.
I feel pregnant again this was the second time while on the pill? Again delight was my reaction on discovering this. Sadly at 8 weeks I miscarried. Neither I nor the baby suffered, thankfully. But to my confusion, which later turned to indignation, my doctor, without test or examination, simply informed me to ‘hop back on the horse’! Though I wasn’t in pain, I did feel a loss….I genuinely believed a doctor was always there to care, if not to always cure. What kind of advice was this to give to a young woman? I left the surgery with my tiny loss rapped with care in my handbag. I was told drop it to the maternity hospital they’ll look after it!
I was about to learn the truth about life and birth and with it came the realization that we are not safe or in control when it comes to Mother Nature and the workings and failings of our bodies. I would learn about people’s true nature and I would learn that sometimes, there is no cure. Worse, I would find that sometimes, even without a cure, there was no compassion. I was also about to meet people who, in today’s cruel world, can only be described as heroes, showing great faith and bravery that cannot be explained in words. One has to receive these gifts to appreciate their enormity – some of these people are the doctors and nurses of the Cork Maternity hospital.
The miscarriage made the want for a sibling for my daughter, and I soon fell pregnant again. This was the only pregnancy of five that I would plan. My world was so bright, our beautiful daughter now walking and talking, sharing in the joy of my growing tummy. Though it was all about to change forever, I keep the memories of those perfect days and nights fondly and for always close to my heart.
One morning, when I was sixteen weeks pregnant, I woke to find myself lying in a pool of water. Immediately distressed at the source, I franticly searched my body, discovering that it could only possibly have come from the baby. That’s when my life turned, and though I won’t say it was for the worst, but it would never again be the same. I was 22years old. The morning I woke surrounded with water. I set out on foot to the hospital, never imagining that something so terrible and unbelievable had happened as to break waters only 16weeks into pregnancy? I was first seen in the admittances room by a midwife I knew well. She, like me, didn’t believe for a moment that I could have broken my waters so early but, to put me at ease, she sent me for a scan. I went to the radiology room and sat in a row of women, anxiously waiting my turn. It has and still does amaze me how so many things can and do go wrong during pregnancy. I had, three weeks prior, suffered a small bleed but was simply told that sometimes unexplained things happen in pregnancy. I had foolishly believed until that day that nothing but joy could come from conceiving a child.
I entered the darkened radiology room, warmed by the smiles and welcome of Mari. She was also someone I had become fond of during my pregnancy on Emilia. As I told her what had happened, the expression on her face changed, giving me my second warning that something was wrong. While she conducted the examination, she questioned me over and over, seeming to be bewildered at my answers. She took long close looks at the images. Fear choked at my throat. When she was done, she sat next to me, took a deep breath and explained that I had indeed lost my waters. She could not see why it had happened but – and here she paused with a compassionate look – she said that without water, a foetus cannot live, breathe or grow. Tears welled in my eyes and my heart skipped a beat. She seemed to be baffled by my condition, as though she had not seen the like before and said as much. Before I had the chance to react, she became the first of many who would try to support and help me. She took my arm as to shake the fear from me and smiled, saying that as long as my child’s heart was beating, there was hope. She added optimistically that the scan showed her ‘a strong spin, like ivory’, she said. I sat in that darkened room and poured out in tears the fear I felt in my heart.
When I returned to the admissions room, utterly distraught by this turn of events, I found my gynaecologist waiting for me there. He brought me to a cold grey office where he looked through a clipboard containing a list of all the events that were likely to take place over the next few days all with a terrible ending. I would most likely deliver soon and if so, it would cause the death of my baby. But if my body did hold on, I would have to be at least twenty four weeks along before any drugs could be given to help my baby’s lungs to develop, before my child would be considered viable. He went on to say that due to the fact that I was only sixteen weeks along, if the baby did remain in the womb, that it would become squashed and that a natural delivery would probably be very unlikely. There was also the issue of infection…if I or the baby became septic well we could die! Upon noticing my stunned expression, he took a break from listing possible medical problems to show some compassion. He said that my situation was very rare, that he had only once before in his thirty years on the job met a woman with ruptured membranes so early into pregnancy. I thought to question him on the outcome, but did not for fear it hadn’t been good.
The only questions I could muster was why, why had this happened to me? What had I done wrong? He answered that he couldn’t say for sure. It could be one of two things; a ripe in the womb or a disease that the baby might have. I searched the room through a haze of tears, at a complete loss as to what for. The ticking of the clock on the wall sounded, appropriately, like the tolling of the bell at a funeral. The sunlight streaming through the window seemed to mock my pain. That day would stand out in my mind as the day my world became too dark for sunlight to shine, and would remain that way for another decade, with an occasional silver lining gleaming through to give me the strength to carry on.
He said that the baby might have ‘Potter Syndrome’, a condition which effected a baby’s growth in the kidneys and bladder. Though I could not possibly grasp all that he was saying, the overall message was clear. He held much less hope than the nurse before him, my child would not survive and there was really nothing they could do. I knew too by his reaction that he had more to say but for the time being, the less I knew, the better. This decision he took alone. I was told to go home, to prepare my family for the worst and collect what things I might need for my time in the hospital. Upon my arrival I was now experiencing pain; I underwent another examination during which the nurses found that I was in labour. I was sent to the labour ward where they managed to stem it, for the moment. But I could tell that they all believed I would lose my baby anytime now. I was in and out of the labour ward for two weeks, enduring little episodes of pain, bleeding and leaking water. It seemed that as my baby made it, my body let it go. Every movement scared me and every thought I had was more frightening than the one before it. I was now faced with the horrifying prospect of losing a child. I made all kinds of request of help; from asking my doctor to sow me up, anything to stop the birth .I would have allowed them to hang me upside down if I thought it would have saved my baby.
ONE MANS TRASH IS ANOTHER MANS TRAESURE
In hospital the days pass with an agonizing slowness. As they had for me. I met women waiting to give birth to triplets. Women caring dead children waiting to induced labour. At the time I could have never imagined I would spend almost six years in and out of there .I would in time become so familiar with the wards, the sounds of fear, and the sounds of pain hope birth and death. I’m sure in my passing my ghost will walk those corridors.
Finally, after nearly three weeks, I could no longer take it and made the decision to go home. I determined that I would do as my parents had thought me and carry my cross at home, feeling that waiting for the worst could be best done there. It was by now puzzling to doctors as to why my baby had not flowed after the rupture of the membranes and that neither of us was infected. This medical oddity had become my only source of hope. My doctor was against it at first but as he felt there was no actual way to help me and that if I mis-carried such a small foetus, it would be quite similar to my last miscarriage; he relented to my request, under the condition that if anything happened, I would return immediately to the hospital. I can assure you this command I followed which in time over many years meant I soon became a fixture rather than patient but felt perfectly safe within the hospital amongst the staff as safe as I had felt in school, a strange way to feel considering the danger and unknown. I signed the forms presented to me, breathing a sigh of relief as I went home. Promising to take my own temperature every 4 hours and return immediately if it became high.
The weeks passed with agonizing slowness and I would be admitted several more times in labour yet leave again with child , but finally, the day of my appointment came and I met with my doctors again. He was surprised my pregnancy had continued, another scan showing I had little to no water to allow for life let alone movement. However my baby did have tiny pockets of water around his head and I could feel him moving. After the examination, the doctor said that in order to determine if it was indeed ‘Potter’s Syndrome’ that was causing my baby’s water to flow from my body, I would have to travel to Dublin. [I would travel several weeks later and thankfully this was not the case] I had now carried my child for eight weeks without water. So far all that the doctors had said would and could happen, had not. At this point they gave me a drug called ‘Dext’ a steroid which would help develop my child’s lung which had to be injected to my thigh. I was shocked by the pain and started screaming nurses had to hold me down, not literally but two nurses took hold of me left and right and embraced and comforted me, it felt like acid traveling through the veins in my bum and legs. Though this injection made me cry the first time, and act the maggot the pain of receiving it only increased and I would break into a sweat and panic before each insertion, but every moment that my child remained safely in my womb would prove worth the discomfort. I was to receive the drug twice every week until I delivered. To all the poor nurses who administered this drug, thank you for your patience, understanding and support. I love you all dearly and still think of and pray for you often!
I can safely say this time of my life was harrowing and my ability to deal with it nil. However in doctors I trusted and had faith they could and would help me, my situation was so rare there were no answers, no reasons, and no hope! I recall one night at home, when I had not yet reached viability of 24 weeks. I had called a doctor as Emilia had taken ill. Though I resented the need to call a doctor, feeling it was my own illness which was rendering me unable to care for her. I recognized my daughter needed and deserved much more than I could give at the time. It was a dashing tall English female doctor who called to my home as I was unable to move about, as she examined Emilia, who god love us had an ear infection, she noted “ you don’t look to well yourself” well I wouldn’t I and my unborn were for all intent and purpose, dying.
I explained my situation to her and how I felt the need to be at home with my family rather than alone in hospital facing the worst. She was horrified and became very distressed for me , her reaction putting the fear of god back into me she began to comfort and advise me “save yourself any more pain your too young for such suffering and your poor baby if it survived oh dear why don’t you have an abortion before it was too late”.?. A baby growing so underdeveloped and without water held little to no chance at birth the percentage of survival was 1%. I agreed with her that I was a bit mad to believe this would end well, but I did and for that reason, I just couldn’t and wouldn’t let go. This was at a time in my life and Ireland which had only recently tried, in a public storm of controversy, prevent a young girl having an abortion. The poor girl was a minor who had been raped. She needed one I did not!
I was still with child damn it and raised a catholic; I did not mention our conversation let alone my sudden realisation of the trouble my baby and I were actually in with anyone at the time the even the word abortion was offensive to me and all those connected to me . Instead I clung to what Marie had told me in the radiology room and it steadied my resolve. “Spine like ivory where there’s life there’s hope!” I just knew I would never and could never go through with an abortion, I also knew to it was not a topic, I felt I could discuss with family either, it simply wasn’t a choice. At that time I believed myself and all others around me, believed this would send me to hell. So be it I thought to myself. No matter what, we will survive, for one man’s thrash is another man’s treasure and the child within me , live or die, was a gift that I was not about to give up on as long as he lived within me. He was fighting with everything in his tiny little being, clinging to a life that I was not about to take away from him. I prayed as did my poor mother for the strength to continue, to be able to deliver my baby at a time when the doctors and their medicine could help. For now my faith was steadfast.
I continued to leak a pinkish kind of fluid, a mixture of blood and amniotic fluid. I was now twenty six weeks along and to the staff in the hospital, I had become a bit of a celebrity. They gave me so much encouragement and support and with every week that passed, the hope of my child actually surviving was becoming a reality. However my gynaecologist, though becoming excited, warned that if my baby was alive on delivery, the damage caused in the womb could be quite severe he had not mentioned this till now, he added my baby may not live long. Taking all this into consideration, he decided that if I made it to thirty two weeks, they would bring me in and section me, allowing the staff in the special care unit to do what they do best – give hope. What this meant was that my baby would be tiny and two months premature, to stay in my womb after this point would have squashed and or suffocated him. I was then introduced to the head paediatrician who would be caring for my child. He was a very well-spoken man with an immense presence and he was fascinated with the fact that I had carried my baby without water for two months now.
My fascination with it all had long since waned, my physical pain now like a constant torture and the burden of no one, except for the nurses. Now, to everyone’s disbelief, I had managed to carry my baby to thirty weeks, at which point, it was decided to bring me to the Neonatal department to see for myself a premature baby. I had now for all intent and natural purpose been in slow labour for three months! I was to be sectioned any day now, the child inside me tiny, squashed and unable to move. The pain unbearable but my need for this child to live overrides this and so much more. It was at this point that I was told that being squashed the way he had could likely have already caused injury to my child’s spine and legs. They had not seen such a pregnancy come this far! I often felt they knew as little as me. I was indignant that I hadn’t been told of this before. I couldn’t believe that I had managed to come all this way to find my troubles, my unborn child’s troubles, had not yet even begun. An unnamed guilt also edged its way to my mind. I felt I had failed our little family and my unborn child. How would we cope if our baby dies and what if its disabilities are extreme?
The paediatrician gave me great hope I knew after our first meeting just by speaking to him, in awe of his presence a tall very well spoken compassionate man-doctor. He was somewhat fascinated with us and his encouragement, curiosity and personality allowed me without hesitation put my child and my faith in his hands.
Monday, the 18 of September 1998. The section was finally performed as the pain and bleeding had become too much for me to bear. I was alone for the section and thankfully, it all happened very quickly. At that point, I was thirty one weeks and three days gestated. They were required to make the incision lengthways, a cut which was referred to as a classic C section. They had to do this because Dave was in an upward position, standing if you will in the womb. The operation would leave me with a five inch scar which started from just under my belly button. All of my life I had been blessed with good health, never even a broken bone and now, for no apparent medical reason, I was both physically and mentally scarred for life.
After he was removed, they allowed me a quick glance at my new son before dashing off with him to the baby’s intensive care unit. I heard him, as he left surrounded by doctors, making a sound like he was choking. I cried and prayed as loud as my lungs would let me. While the doctor stitched me up, I prayed and staff constantly comforting and assuring me that I had done well and the fact was that my son now had a chance to survive. A mixture of dread and fear for my son tangled with the physical cruelty of being drugged to remove a dying child so early from my body. I knew it had to be done to save him but this knowledge offered no relief. I felt so week, useless and frustrated. When I was strong enough and David properly settled, I was allowed to enter the neo natal unit to see my little boy. He weighed exactly 3 pounds and his skin was transparent. I looked through the glass of the incubator and saw his tiny mangled body, he was beautiful with a head of fine hair and tiny squashed little face and limbs, tubs running through his arms, legs and even one down his throat breathing for him and as the machine pumped oxygen into him, I felt no more pain, I felt my little boy need his mother. I wanted to tear him from the machine and hold him……but for now all I could do was express milk into a machine, stand at his side, pray and too often cry.
Though neither I nor my doctors knew what had happened to me and why, I was assured that it was highly unlikely to ever happen again. I was simply told to give my body a rest before trying for another child. The whole experience had been so frightening, painful and expensive, that I felt I didn’t ever want to fall pregnant again. I had never even began to think about what would become of my son in the future. I was made to believe or somewhere along the line convinced myself, once discharged all would be well. If only! I also felt my age and innocence. I feel because of this I was not informed of much. I was told about the good days and I saw and felt the bad days. It took many months but he survived. We survived.
Dave would spend a gruelling five months in intensive care in all, enduring several surgeries and consuming many different medicines that I did not understand. I would see, many times, my son stop breathing and be bagged by the brave staff of the Maternity hospital. Having seen these things, I will forever fear my own, and my children’s mortality, something that still, in my daily work, is an obsession that consumes me. I still sometimes feel that to me, this need in my mind for everything to be clean and prepared, for every change began here my first trip to the neo natal unit. When the day came to take Dave home I was filled with as much fear as hope and excitement. On discharge I was told he would need to be monitored for two or more years and he had a congenital dislocated hip which would be treated in the orthopaedic department when my son was strong enough.
I had become very efficient in the management of my time, and became stronger every day and so glad to once again be Em’s soul career and have the strength and will for the domestic side of life. Very quickly my life became consumed with appointments and even though I was completely worn out I felt very contented to have my tiny son home, the doctors having painted a less satisfactory outcome. I was very lucky to have my little boy and felt truly blessed.
I had been taking the pill but would often forget it .As did I with much things now in my life the care of my son priority over all else. I had, like most women my age, tried and tested many forms of contraception and for women, there are a lot and for me, they all failed and made me ill. I noticed this common trend with many women I met. Over the years, my observations of the pill have left me with little faith in it. To receive the pill, you will see your G.P., have your statistics taken - height, weight, blood pressure etc. They then sit you down, reach for their book of drugs, as thick as a bible, and will choose from hundreds the one s/he thinks suitable for you. S/he will then tell you that they will start you on this and ‘see how you go ‘I spoke often with mum about this; poor mum in her day contraception was believed to be the work of the devil. This was not enforced by her husband but by society and the clergy. During one of our conversation, which she could always turn humorous no doubt due to my ever growing seriousness regarding such things? She laughs and said Jesus the pill if only, one of your aunts she told me had given birth to her first child in the fifties, the horror of which she never got over. When guilt for not wanting to go thought such pain again denying her more children, she felt the need to go to church and confess to the priest that she had been avoiding conception. As mum giggled at the memory she said the priest asked my innocent aunt how she was committing such a sin she told the priest her husband at her request was pulling it out, please excuse the tone.
The priest became infuriated and leapt from the confessional into where my aunt lay on her knees, he physically dragged her from the building and band her for life, while mum sat at the altar trembling with both fear and laughter. Oh mum and her tails, fair play to my aunty though she would and did not fall pregnant again. I began to question the whole area of woman’s rights, our rights to education contraception and the right to make such personal decisions for ourselves. Such things would not happen today or do they? What if I got pregnant again the question constantly rattled my brain and in time ripped my soul and sanity apart.
PREVENTION IS BETTER THAN CURE
Coincidentally, I had noticed that most every woman I have met had like myself been on some sort of contraception pill or other , but all had at least one child. I had fallen pregnant again and all fear left me as the knowledge filled me yet again with maternal love, hope and excitement. It still fascinates me today how instant and differently a woman changes on been presented with a red or blue line and be told she’s pregnant. The doctor’s had said it would not happen again and as I passed the sixteenth week, I did so with great strength and confidence and by now much faith. I considered myself truly blessed. As keeping water thus far meant the infant’s development would be far superior in the womb. Twenty weeks along my pregnancy, I was feeling wonderfully strong and healthy, with a glorious growing bump for the world to see. I believed this to be my last pregnancy and cherished everyday of it.
As I stood one afternoon warming my bottom by the fire and as my little Em ran about the house playing while Dave slept peacefully nearby, my waters broke again, gushing away from me. I felt my baby fall with it but strangely, there was no pain. Within seconds, my beautiful bump had disappeared. I stood shocked, snow white and fit to faint with the fright. An awful experience, I had never actually felt my waters breaking before as with Em they were broken after epidural and with Dave, I had been sleeping. I knew that at twenty weeks, this was very bad and I also knew from a scan a few days prior that my baby was in the delivery position not stuck-breached like his brother before. I would labour and lose my child four weeks before viability and I didn’t need a doctor to tell me that. I was never more afraid in my life, and suddenly remembered why I had wished for no more children, not to protect me, but the unborn and the two children I already had.
I immediately left for the hospital. Couldn’t bring myself to inform anyone I simply delivered my children to the sitter stating I’d be back, hiding the fact I would return with my baby in a box. The contractions had now begun and I thought my baby was going to die as I cried and wondered why, for no goddamn apparent reason; it seemed these things were happening to me and my poor children….my family ….our future ….our health! A huge part of me died that day no girl or young woman should know such fear. God knows I spent enough time in my GP waiting room trying to make sure this wouldn’t happen that I would not fall pregnant again. I had a bigger problem how would I make my doctors understand for me “prevention was better than a cure”, given there wasn’t any cure! Or explanation, for that matter. But for some reason I should not and could not have any more children. And as I leaked fluid and my baby grew I begged for a sterilisation and prayed to god for the impossible … that my child may live and suffer no damage be it physical or otherwise. I had since learned dav was a long way from recovery himself, suffering multiple illnesses and surgeries during this time. They brought me to the labour ward and gave me dext for the baby’s lungs, some pain relief and some other drug to try to slow and hopefully stop the labour. To the wonder of the hospital staff and in hindsight myself, I tried and succeeded in falling asleep and the next day, with only back pain remaining, I was moved to a normal ward. As the news quickly spread to family this awful nightmare, was happening again. But there was a bigger problem we were wide open to infection and if I did get one, it would not only put my baby’s life in danger, but my own , swiftly returning back to the fear and torture that had been dans pregnancy I thought shit not again. But wasn’t able to absorb it I choose to cling to the faith instead, faith in my unborn and the fine staff who to date had cared for myself and children. One night I had a dream and I saw this gorgeous dark baby in a pram I had as a child it was been pushed by my deceased brother I could not see his face but the babies clearly. I thought no more of it but found great comfort in it.
And of course aside from this temporary mental state of madness was the worry the medical reality, I had already got away with this once, a miracle they explained, doctors warned to do so again was highly unlikely. My babies head was engaged in the delivery position, literally allowing him to come away from my body at any moment. He would be born perfect but not viable …..Words cannot express my horror I was now 24yrs old .The days passed in familiar and agonizing slowness, I choose to return home with my cross conducting temperature checks every four hours. Though dizzy from pain killers and mournful of my beautiful bump, I would have to somehow stay strong and hold on. As the days crept into weeks, I protected myself as best I could, unwilling and unable to let go. With the passing of each hour though, my brave baby’s chance of survival grew…but at what cost? And with what disabilities? Terrifying thoughts ran through my mind, all of which scared the life out of me. I worried if he would have brain damage, if his heart and lungs were weak or if he would have the terrible multiple afflictions Dave had and what if it two had physical issues with his hips legs. The questions were never-ending and these thoughts and fears would stay with me for many years to come. I couldn’t believe it was all happening again and what was worse – I had been told it wouldn’t!
It soon became more difficult to stay optimistic, my most common emotion being fear. I could see in my mother’s eyes the pain she held for me at the news that I was yet again losing my baby or facing another very premature baby. Even so, she pushed me on, with her words and actions, as she had always done in the past. God she would say only gives you the cross you can carry. Without actions, my mother always found a way of instilling strength in me and it was this old saying one of her many her only tools. That I believed and her own faith in God, children and love... I recalled all she herself had endured and I knew that I too would have to learn to be strong for my children, no matter the cost. And those costs soon began to take their toll, both physically and mentally. Words cannot covey the pain, I will go as far as to say even shame sorrow, one feels when unable to carry a child in the womb. I felt like a faulty, unwanted machine. Why had my body let me down? I fully believed by now that medics didn’t know very much at all when it came to my problems. Every time we met during the pregnancy, I spoke of contraception. I begged for a tubiligation, as I knew I would be sectioned again but because of my age, religion and marital status, he refused my urgent request. I could never understand why this one man, a religion I didn’t choose, or even practice per say, and my medical card had such complete control of my life, a fact that still galls me today…yet to you the taxpayers I am forever grateful for you and you alone, had too and continue to pay the cost of this. And my story has yet to begin.
The premature birth and survival of my third child insured I would never work again. I had managed till now to juggle two children appointments and part time cleaning and childcare. [ Sadly I would have to learn how to beg borrow and steal, to feed and protect my children ] I had begun to grow up and started to absorb a lot especially in relation to the hse but I did not know it then. I had hopes and aspirations to return to college when my two children began school hoping to become a writer or journalist. I recalled Ms C my teacher in secondary school and for a brief moment I wondered was she right had I, would my life amount to nothing. [Until now I have told no one this but it is at some point here I often instead of thinking of the future which scared the shit out of me, began to suffer with suicide ideation, death had become my friend, if my baby would die please god I prayed just take me with it} but my two children waiting on me at home, for now, dampened this and my love for them over rode any pangs of sadness or suffering on my part especially the will to keep going. So I began to write [keep diaries] as I now spent 90% of my time sitting waiting in hospital. Though I had no choices in the things that would happen, I had the freedom to pen this extraordinary experience all be it terrifying. Someday I thought I will write a book about our journey…which was and really an ordeal and everything now depended, this depended on us getting out alive! I had faith we would and longed to thank all those who already had cared for us, especially the paediatrician who saved my sons lives .
After many conversations with both my gynaecologist and GP, they came to the decision that the best contraceptive for me would be a vasectomy for my partner. On first hearing this, I thought in amazement ‘Jesus Christ, they’re willing to operate on a man I’m not even married to, even though it’s me that can’t carry babies’. It was I that would be sectioned again (the last section I had would not allow me to deliver naturally) and it was I that wanted to be sterilized (though I did not understand, nor would I be enlightened on, the effects this would have on me). I felt the whole situation was ridiculously easy to fix and understand! But they could not or would not tie my tubes, they then moved onto the idea of inserting the new ‘Marina Coil’.
Imagine in this day and age, it took the conception of my fourth child before I, with my second level education, would first come in contact with the Coil. I feel now that had I known about the coil after Dave, it might have had a more beneficial effect but that’s something that will never be known. I was told that it was great, that it lasted five years and that it was ‘easy in, easy out’. Without other options open to me, I agreed to the Coil. I continued to try and persuade him to sterilise me but failed. Everything hurt even walking was painful and anytime could be the time my baby would come. With every pain, my mind was saying ‘this is it, he’s coming now’, but he didn’t. He held on, we both held on and I managed to carry him for twelve more weeks with little or no water.
On March 27th 2000 I was sectioned for the second time and told I had another son weighting 3pound 3 ounces. And it was worth it, all the pain and worrying. When I saw that mop of black hair, he was perfect and I knew he was safe he was in fact the child I had seen months earlier in a dream, a perfect little angel a baby brother for my darlings at home. You could not wipe the smile from my face I knew he was perfect I knew he was safe ….for now that is! The dextactoron had effectively developed his lungs and the fact he had water up to twenty weeks showed on his tiny but perfect three pound three ounce body. I couldn’t believe the difference three ounces made and four extra weeks with water and knowing he was in very safe hands. Though the pregnancy after rupture was no less traumatic and or painful then the last. The great condition of my new-born filled me with copious amounts of pride and joy.
This experience was totally different then Dav's and in hindsight no doubt my saving, it was without surgery and Tim’s time in neo was mainly to allow him grow. To my joy, it would only be a few days rather than months, until I held him and breastfed him without the need for feeding tubes. Inside his incubator he glowed. His eyes and skin were dark this was actually in fact jaundice but he was the colour he had been in the dream. When he was discharged at three months old he would, like all premature babies, be monitored for at least the first year or so.
I was to find that from now on, all of my emotions would be temporary, except one – that of my constant growing fear: what I would do if I got pregnant again and what could I do to prevent it? I wondered, as I complained to my doctor, ‘does he actually understand, does he know how I feel and can he help me?’ Sadly, for many years, the answer was always no, he cannot. I now find myself wondering if doctors are actually available as a selling agent to pharmaceutical companies rather than the commanders of the community they served. So I allowed for its insertion, but in complete and other dread and ignorance. I choose to respect the doctor and his understanding of the situation, and therefore I never asked why. My age for now another enemy I to pondered the fact, that my marital status also played part. I was informed had we been married I may indeed be allowed sterilization with my husband’s consent. I had now learned what it meant to be Irish, it meant only that I was a single young woman, and I would be deprived of both my human right and medical right to choose. But always the optimist I hoped it would all soon be over! Though tired and somewhat damaged mentally physically and emotionally at this point, I was however simply utterly delighted, proud and looked forward to the future with my daughter and two miracles.
DOCTORS DIFFER, PATIENTS DIE
No one asked if or how I would manage to breastfeed, recover and visit an infant daily in NNU while attending to David in another hospital after his operation, whilst also caring for my only daughter and home I now rarely saw. I did try to explain but since no one was listening I continued to the best of my ability but failed regularly. Still, I gritted my teeth and kept going this was my only choice. Tom was growing well and this temporally alleviated concern I had for him. Nonetheless, fear became a constant companion - what would I do if I got pregnant again, causing the death or disability of my unborn child.
As for the coil, my joy was short-lived. I wondered, after its failure (the pain of which is still with me today), why they hadn’t suggested this ‘modern miracle’ after David’s birth. So it followed, six weeks after my second caesarean section (and in hindsight too soon), I was instructed to return to hospital to have the Marina Coil inserted. Off I went, coil in bag alongside the milk I had expressed at home for my tiny son. After holding my baby, I went to the admissions room. I did as instructed by the nurse while awaiting the doctor, but it wasn’t my doctor’s familiar face that opened the door. It was a training doctor, a man with very poor English, who I had never met before.
I will spare you the gory details but in short, the damned thing would not go in. The nurse informed me that it should under normal circumstances, but my circumstances and I were far from normal. Both doctor and nurse left and then someone (I think it might have been a gynaecologist, I’m not sure), came to inform me that I would have to go to theatre and be sedated to get the coil inserted. I privately thought that this could only happen to me, like I hadn’t seen enough of the theatre! They said it was a quick, simple, painless procedure, possibly more for their benefit than mine and off I went. I returned home for some bed-wear.
I was drained; things never seemed to happen the way the doctors had told us. I woke from my procedure and was up after a sleep. The nurses demanded I stay the afternoon so I could have a, quote, ‘ well-earned rest’. When I left, I was told I might continue to experience some pain but it would subside soon enough. But by later that evening I knew that something was not right. The pain and bleeding got worse and continued for several days until I went to my GP, who told me to go back to the hospital. I was sent for an ultrasound, only to be told that the Coil had moved and it would have to be removed immediately.
Nothing could explain my level of disappointment and anger at learning that it wasn’t over. I went back to the admissions room and waited to have my ‘modern miracle’ removed and was once again sent to the theatre. I begged the lord and the doctors to please make this the last time but returned home with no hope and was once again trapped in my world of fear; my only offering of protection was the dreaded pill. While my little girl was being raised by family and my two tiny sons both lay in different hospitals.
Occasionally over the course of the next couple of years, I changed versions of the pill but always, the side effects proved too many to cope with, often forgetting to take it in my manic routine. My complaints continued to fall on deaf ears as my new GP became more arrogant with every visit and I also began to realize that I had a dependency on some pills and that it was increasing. Whenever I had a pain – a stomach ache, irritable bowel syndrome, he always had a magical pill that could fix it all.
The process of my physical and mental decline was slow, but inevitable, and tragically; preventable. The events leading to the early birth of my two sons and the hardships that followed immediately after seemed to be abating. But now I would frequently become withdrawn, worrying about meetings, appointments, surgeries and the future in general. No one noticed and this is how I wished to keep it. I had to learn to be prepared for anything. All this in addition to problems I was considering normal - ear infections, breathing problems, hernias…the list goes on and on.
Watching our children grow is in itself one of life’s great rewards, for me it was made all the more wonderful, with the boys being born so tiny. Each time they crossed one of their development thresholds, it brought immense pride and relief. I believed too, with the right support and input that they would, as adults, be completely strong and healthy but most importantly, independent. For this, I pray every night. With all this said so far I must add I have never known such greater joy or privilege than that of the care of my children. With all that went on around them, they remained good, happy and were right little tearaways with three completely different personalities ....everyday they brought the best out of me and I loved it. Feeding them, teaching them...playing games with them ah happy days no matter what I didn’t know. I knew I was and still am one of the luckiest mothers alive.
A CHILD IS GOD’S GIFT TO YOU, YOUR LOVE FOR IT IS YOUR GIFT TO GOD
I learned of my final pregnancy while in Daisy’s house. During all these years and for many more to come, she rarely left my side. Without her friendship I would have given up. As we sat chatting, I suddenly felt odd and then felt what I knew to be my waters breaking. I knew immediately I was pregnant yet couldn’t fathom it. I also knew that this baby would not survive, having lost my water without even knowing I was pregnant. I initially presumed I was somewhere between 6 to 9 weeks. I went to the hospital alone for the doctors to confirm it. So busy in my routine I never noticed I was already 12 weeks into my pregnancy. How? Why? While on the pill, my GP prescribed yet again another prescription – this time anti-biotics. He failed to mention this particular medicine made the pill unreliable!
They had no need to tell me the obvious, that my baby would most definitely die. However, like the pregnancies before, my baby did not follow after rupture of membranes. What’s more, now that I knew this pain was not the pain I had come accustomed to, but was in fact another pregnancy, I could feel the child inside me. And as with my pregnancies before, I was instantly filled with that unexplainable maternal love and or strength. However, I could not begin to imagine how to share this knowledge with friends and family. The pregnancy was short. I struggled painfully and it was the hardest thing I have ever done. If there was ever need for an abortion it was now but I couldn’t. I was filled with worries and dreadful fears, fears which were now again tangled in such hope, faith and optimism. Never once was I was told he would survive. But somehow, I knew he would, just as I had while carrying his brothers, but kept it to myself for fear, my hope and faith be mistaken as madness. For this baby to survive was, in all manner, medical and naturally impossible.
Before this pregnancy, I was pro-life and I could still not envision my own situation as a reason to resort to abortion. On all of my sons I had a unique issue, as every question to doctors about how and why etc. was answered with "we just simply don’t know". Their not knowing was my hope. As long as my child stayed within me, it might live.
I now firmly believe all young women should have access to information, contraception, education and the right to their own body. It is only the choice of the woman as it is her life, future and body and I am saddened for all those women in Ireland who find they are left with no other option but to carry a child conceived of crime or condemned to a life with all sorts or catastrophic illnesses and conditions. Or to be forced to carry a foetus to full term knowing it will be stillborn, or as in my case, be born too early and will die soon after. And worse to be made to travel, feel fear shame and stigma – how disgusting! I only requested permanent contraception in the form of a sterilisation and even this was denied!
It was too late. Why hadn’t they just done the damn sterilisation? It was lucky I still had faith on my side, that and I and my family had long since embraced my madness, humour and the ability to see light, even in the darkest of places. I had known this pregnancy would happen, albeit not as soon as it did and I knew that the accursed coil and previous C-sections had damaged my body. I had yet to learn I had been suffering from not one but three conditions, but would not learn of these untill 2009. When I met with my doctor he was very upset and even though I looked up to him, I found myself becoming angry with him since it was me who was again about to journey to hell, this time with little hope of coming back. However, he had finally, mercifully relented and allowed me a tub ligation during the section on this pregnancy, "assuming we made it that far" he said, and “whatever you're doing keep doing it”.
If you have read features in relation to pregnancy, you will know that when you’re twelve weeks pregnant, a baby has a little head and beating heart. As he grew, the pain was similar to a tennis ball expanding to a basketball with no room to allow for it. Terror and torture rolled into one. I would remain that way for eleven more weeks. Again, I felt death himself become my shadow or friend. Sometimes a welcome one. I was re-admitted on several occasions and again at 22 weeks because the pain and bleeding had become too much for me to bare. That week, or to be exact, the next eleven days; were the most terrifying of my life and would not be the last! I had been sleeping and was found bleeding profusely in my hospital bed. I happened to move as a nurse passed and she noticed the blood. She immediately shook me awake and hurried me to the toilet so that she could find out what was happening. I knew what was happening but I did not open my mouth, my baby was trying to come but I wouldn’t let it. The nurse ran for a doctor and I began to pray and cry. I was cleaned up and brought to the labour ward as I slipped in and out of consciousness. Truth be told, I was praying to die rather than be sectioned barely half way through my pregnancy...by now I was counting the hours and was completely out of my mind. I had, for the sake of my other three children, now become an excellent actress and carried on smiling and working in the home, when not dying in hospital.
I spent another day in the labour ward hoping the pain or bleeding would stop and I was told they would have to section me. I was twenty three weeks and four days pregnant and my baby and I were in a world of trouble. As I was prepped for surgery, some nurses wished me well while others reminded me of the danger we were in. As they took my son from my body and preformed sterilization, I swear I could hear the angels in heaven singing, praying. The details of that labour, that day, I cannot share on paper, all that happened was beyond me. It would take many years before I, my then failing mind and body, would realize that for all that, this was the hardest day of my young life; it was also the greatest day of my life.
As he was removed from me, they told me I had another son and asked ‘what will you name him?’ ‘Nathan’ was the name that trembled from my lips, ‘it means God’s Gift’. He was alive, faith’s rewards sometimes lie in the darkest of places…..he was tiny, though, they warned; probably too tiny to survive, before rushing away with him. Alone in a recovery room, I remember screaming for more pain relief, the nurse replying I had consumed enough to kill a horse. I have tried to forget, but that day will haunt me and my body forever. Once I had been settled back to my ward a nurse came for me as they were going to baptize my son, explaining that he was not going to make it. I screamed abuse, saying I had told them so and that I did not want to witness his death. Sadly, those first 24hrs, I was nothing more than a caged animal whose offspring had been cruelly taken from her and that is how I behaved and reacted.
Eventually, the day’s events did finally wear me down and I remember praying as I fell into a fretful sleep, knowing that if he lived I must be strong knowing damn well it was all but impossible. When I woke, I was told that he had made it through the night and I asked to be taken to see him.
It was medical opinion that my baby would die immediately after birth without adequate lungs and probably some deformities. Nathan was born on Monday the 12th of January 2003 at 11.35 at a tiny 750g, fighting the world to live and he was perfect. No horror movie, no nightmare, can compare to watching your child suffer so much, let alone a third child and already unable to care for the three I had. They waited until my nightmare had become real. Nathan’s tiny frame was a fright to see but he was alive. As I stared into his incubator, I was told that the doctor who had cared for my other sons was not going to be caring for Nathan and a shiver like no other ran up my spine.
I knew, as I stared into Nathan’s incubator, that even if he did survive, it would be months before we would learn the extent of damage caused. I was angered by so many questions, why was I not given a choice? But in the mist of all of this, I kept faith that my son would live. And every day he did, I found a way to do as he was doing, the impossible. I put my dread, questions and anger behind me. And for the sake of life itself, I choose to do as I had always done, to stand alongside my son in faith and prayer and wait.
A major study of infants born at less than twenty six weeks showed that half have learning or other disabilities that interfere with their lives. Babies born at this gestational age are intensely fragile and vulnerable with immature organs and underdeveloped lungs, so imagine the dangers for one at twenty four weeks and without water for most of the pregnancy. The prognosis was grim. Sadly, at just six days old, months away from surviving, physical disability was a promise. I was told that he had pulled the tube from his mouth, making nurses decide to try C pap - a mask instead of a tube to assist with breathing (there was no doctors present). I found it uncomprehend able that such a tiny creature could lift his hand and pull out a long breathing tube tapped to his face!!?
I immediately became worried as the information I did have told me my son was too small and weak for this mask. I had only been out of hospital four days and to be honest I recall those days, weeks and months in a dizzy blur. This blur didn’t allow me to actually engage in all that was happening but I had complete faith in the staff, as always. That said, my gut – my maternal instincts – told me something was not right but I ignored it. This was a Sunday, he was a week old, both his brothers were much bigger and stronger and were many weeks weaning onto this mask!
Within twenty four hours, Nathan’s condition began to deteriorate; his legs were badly discoloured. I was informed that it was fine, that he was just bruised from being handled as he was so small, that this was something that just happened with IV lines occasionally. The next evening, he was much worse. I looked under covers, and then asked to see a doctor. Nathan was in obvious pain and his left foot and leg were completely black. I demanded to see a doctor but none were available. I would wait two more hours, after which time I was left with no choice but leave my child, trust what I had been told and returned home to relive the sitter. In my distress leaving, I was assured that the doctor was busy but that he would come as soon as he could. The nurse added that there was nothing to worry about, that it was all normal. I reluctantly left for home.
The next morning, Wednesday the 22nd at 9 am, I returned alone to Nathan, as I did every morning, to find him surrounded by medical staff. My heart sank at the sight and my panicked heartbeat, from that day to this, has never recovered. I was told that the doctor had finally seen my son at about one in the morning, that he had looked at the leg and decided to remove the line and that Nathan was going to lose his foot; it had died and would now fall off. Fear and nausea rushed over me. And again, I was tersely informed of Nathan’s dreadful situation. As I became angry and upset I was told this was the least of my worries. I found their clinical, abrupt attitude unbearable. For the second time in my life, I understood how people can be pushed to draw blood from another human being.
Parts of my beautiful baby had died, and were going to fall off. I thought that surely this could not be happening in a modern hospital. But it had. My days again were filled with tears and desperation and I begged for some answers. Again, in my darkest hour, the heart and caring of a good soul would find me, talk with me and unknowing to themselves, they would save the day. Not literally but emotionally. This particular nurse was quietly waiting in the background and when I was alone, she approached me as I stared bewildered at my tiny son. She stood comfortably but very close to me and took my hand, looking firmly into my eyes where I briefly saw my own emotions reflected back at me. She knew me better than I would have known her. She put both her hands on my shoulders and said what I already knew, ‘Do not let this stop you’, she said and added that my little boy was going nowhere. She partially apologized for the doctors, not for what they had said but their clinical manner. I think, and I’m sure this nurse would agree, that they talk and behave in such a way so as to not get attached, to keep their minds firmly on the job. Yet in all I have experienced over the years, this approach is something I could never get used to. I find it has always been more positively productive when a doctor takes a soft, honest, human approach, a rare thing to find indeed. Perhaps most of these doctors do not see these babies as parents do.
I have to believe that their approach is to them their own survival technique. I feel that to see someone like me return to such a place not once, not twice but three times with the odds of a happy ending possibly beyond our reach, beyond medicine, no matter how hard we all worked would crush most people. As I am sure that had they, for a moment, stood in my shoes, they would have felt emotions that should send the nicest of us into a furious rage. All said, there is no excuse for disrespect and arrogance and on that awful morning, I feel they knew they had made a grave mistake in the events leading to my son’s injury and behaved that way to protect themselves.
Things were happening that should not happen in hospitals. At the time, though I felt it, I did not know all that was silently going on around my son and I. I continued to hold back my tears and my anger. I worked, I ate, I expressed milk and I tried to do all I could for all of my children. Expressing milk in those dark days in the neo natal unit continued to be the only motion that kept me sane, kept me human and left me feeling calm and sometimes even worthy when nothing else did. So I watched as pieces literally fell away from my son and were discarded to bins. Slowly, I would learn to cope with each new medical problem my son would have over the many months ahead and even though I swam alone in this unusual medical madness like an innocent child, a large part of me was still happy because every day that Nathan lived, I became stronger. But only that part of me that was the mother of four children. The rest of me, the old Eleanor, was long gone. Nathan was 100 days old before I allowed myself to believe that someday I would take him home. To believe that someday, somehow it would all be fine. I had to believe this for it was all I had to hold on to. He would and without my knowledge, be repeatedly infected with sepsis and colonised with MRSA. He would, all before weighting three pounds, endure eye laser surgery to restore his sight, heart surgery and hernia repairs as parts of his foot eventually died and fell off . I begged god ‘not all of his foot, please lord let him walk’ – he was left with half, losing the heel and all toes. He would later be diagnosed with so many issues that I eventually went private and sadly unwittingly exposed myself to a whole lot more terror and hell.
2-EXTREME LOW BIRTH WEIGHT 725G
5-PERSISTANT PULMONARY HYPERTENSION- RESOLVED
6-PDA LIGATED IN CRUMLIN HEART DEFECT SURGERY
7-CRANIAL ULTRA SOUND GRADE 1 BLEED THREE NORMAL
8-NECROSIS OF THE LEFT FOOT LOSS OF TOES AND HEEL
9 GRADE THREE RPO –PHOTO COUGULATION HOLLES STREET
10-HERNIS REPAIRED TEMPLE STREET
12-PNEMONIA RIGHT UPPER LOBE COLLAPSE
13- COAGULASE NEGATIVE STAPHYLOCOCCUS SEPSIS X 3
14- POSITIVE FOR MRSA 4 CLEAR SWABS
FACE A BEAR ROBBED OF HER CUBS NEVER A FOOL IN HIS FOLLY
Nathan's doctors had made a request for a specialist to see Nathan. After a ten minute examination, I was told my son had Cerebral Palsy of the right side of his body (a diagnosis that would later be changed to Diopligia – Cerebral Palsy of the legs). All I cared about was making sure he would get all that he needed to be as strong, normal and as capable as possible. It was for this very reason I feared falling pregnant with all the physical and mental impairments it entailed, depriving my child of so much when he needed it the most. I loved this child for all he could and could not do, he was no different than his siblings. Maternally, I knew even then he could do anything he wished, and would do it well. All I had to do was love him.
Nathan, with all his problems, was proving to be very bright and wilful. For the hearing test, we were sent to Dublin. He was almost three years old. I had no concerns, I had been informed two months prior that his hearing was fine and that the hearing delay was down to fluid in his ears. However, sadly he was diagnosed with moderate to severe hearing loss.
As Nathan's tests and assessments came back, it almost came to a point where I just didn’t want to share the results and the burden of responsibilities that came with them, with any one. Every time I did, rather than be upset, they would instead become distant and agitated. I had learned by now not to argue; I simply continued to pick up the pieces. When Nathan was home, my work trebled. I would be up at seven and work every day into the night. I would get the two older children out to school with Nathan and Tom in my arms. The pressure just mounted and mounted. It would be easy for me to blame the heroic staff of dilapidated hospitals, but it was those pushing the pens and counting the pennies that have allowed such a story to be real.
This country is as riddled in depression, anti-social activity, child abuse and addiction as it was thirty years ago. Only difference is we have enough money to rectify it, cheaply and permanently for the future. Now, instead; thanks to the decades of ministers trying to make their mark and leave a legacy, we are left with nothing but half built roads, empty hotels, overcrowded classrooms and empty wards with crowded corridors. But for us I fear our biggest loss has been our faith. Faith in God, faith in ourselves, each other and our children.
After the hearing diagnosis, I became completely withdrawn and isolated (three years without hearing aids I knew would and did have a profound negative effect on my son’s development communication and education), I was now meeting a huge number of people from so many departments so I felt a great need to appear on top of and in charge of my situation. I found that many people I did deal with only saw my children and me as yet another appointment or just someone else in line. It truly became ridiculous, all that seemed expected of me, yet I always did as I was asked.
I felt the input of a social worker would aid us greatly, had one being given the role, as it would allow appointment and treatments to come in a coordinated or managed fashion, rather than the haphazard barrage they were at. Unfortunately, no one could see this no matter how many times I clearly and honestly told someone or asked for help. Rather, for the most part, I was made to feel a failure or at fault. Often, my behaviour would appear to others to be the nagging of an overworked mum but if you have read this far, you know this was not the case.
Harry Harlow is the writer of 'The Nature of Love', a book based around his research of Rhesus monkeys in the fifties. Research which would change the way social services and children’s' homes were run. It would have been the offering of research like this which could have saved my family so much pain, living by trial and error. His findings led to three key points. Firstly - basic need. In the absence of contact with their mothers, the infants monkeys became attached to cloth pads. When they were removed they were unlikely to survive for more than five days. Love, he discovered, was as basic a need as food and water. Secondly - love is blind. He experimented with cloth and wire mothers, and concluded that there were little differences in the quality of mothering provided by a surrogate or real mother – when young the baby only needed a basic mother figure. And finally - mothers love. As the baby monkeys grew up with their artificial mothers, they had no idea what was appropriate social behaviour. The lack of response from fake mothers had made them socially backward.
I had little information with regard to anything like this. My greatest fear was the time share difference all my children had with me. I knew this now to be my greatest enemy. I did not know why, I just felt it ate away at me. Years later, through Mister Harlow, our case was proved correct for two of my four children. What was even more harrowing was that some of these appointments just seemed to be a waste of time. Several assessments, often for the same things and too often with contradictory results. I also found specialists would list out all of my sons’ needs, yet the appointments and help would never come. All three of my boys were awaiting surgery, support, therapies, appliances and aids with no end in sight.
One day I received a phone call from a student doctor. I had since moved and changed GPs. I had now seen him almost two hundred times in the past two years. It seemed she thought I would be expecting her but I was not. My GP had given her my name and address and number; she was being taught by him and as part of her training she was to meet patients, to familiarize her to certain situations, then later present a written piece on her experiences. Though he somewhat disrespectfully had given my details to her without my knowledge or consent, I was glad of the distraction so invited her into my humble home. She was less forgiving and apologized on his behalf but I thought myself that it was great, as it was someone to talk to. It turned out that my doctor had told her I had epilepsy and one child, who had heart trouble. This proved to me that I was right in my fear of him and his brand of care. I had, as far as GPs went, gone from the fire into the frying pan.
I remember being quite distressed the same day and she noticed this and the fact that I didn’t have epilepsy and had, in fact, four children. Three of whom had now at least 20+ listed disabilities between them, excluding my own issues. She offered to leave and apologized again. I began to feel bad but was so glad of the company that I offered her a cup of tea and told her not to worry, that it was a small mistake, and she accepted. I began to tell her my story; in turn she asked many questions. I told her my age. I was now twenty eight years old. She listened as I told her how all of the doctors had helped us and in some cases, not helped us. She met with all of my children, enjoying them as I would – they always made me and those around them smile. By now, Dave had turned a skate board into his new legs and had spent the majority of his childhood restricted in a body cast. But my god that didn’t stop him, he managed to be so bold and brave to go out and play like that. And I, to promote his development, allowed it. As for Em and Tim, well; rogues – two utter rogues. While Nathan and I, not yet aware he was very deaf, was like the most saintly child whose eyes were wide open 18hours a day as he sat in awe and wonder smiling in my arms at the family he loves so dearly. She would visit us a few more times and, when she had finished her essay, she gave a copy of it to me. She had compared us and the HSE to the characters in "to kill a mocking bird", which you have to admit is a bit ironic. I cried with pride for days and realised what I had to do. I had to write my book, I had to investigate all the "mistakes" to date around my children’s care. I had to learn, I had to live. This was no time to give up but in reality, as poor as my health was then, it would get a whole lot worse first.
The HSE continued to make mistakes in the care of myself and sons but I had no choice but to absorb all of this and pretend it wasn’t affecting me and my children for their sakes alone. I barely ate or slept consuming a cocktail of drugs which let the years pass in a busy blur of separation, alienation from family friends, endless crying, homelessness, extreme poverty and debt. All this as a social welfare recipient attending endless appointments, meetings, surgeries, complaints appeals etc. In 2005 I requested Nathan’s neo natal notes as I had decided and had begun to write our book. I had, since 2000, kept collecting the paper record of all that was happening or in most cases not happening and made many friends within the HSE and many other departments. Sixteen years on, with these ‘freedom of information’ requests, my diaries and the information obtained from the HSE themselves, I have now catalogued what I call the HSE dossier. With its examination and understanding, I believe it has the potential to save our health care system.
YOUR HEALTH IS YOUR WEALTH
To all those who helped and cared for us thank you. To those who didn’t, I beg you, for the sake of children and of hope, please try a little harder as it is in us all to be better than we are. I know now a doctor is not a doctor unless they can care, a teacher is not a teacher unless they are willing to learn, a law enforcer cannot protect without protection. We are all here for a reason, and that is each other.
It is time Ireland to reunite or forever pay the price.
This is a story about four people named everybody, somebody, anybody and nobody. There is an important job to be done, and everybody was sure somebody would do it. But nobody did it. Somebody got angry about that, because it was everybody’s job. Everybody thought that anybody could do it, but nobody realized that nobody would do it. It ended up that everybody blamed somebody when nobody did what anybody could have done.
As I end this book, with the story not yet fully told, the inevitable has happened. Of course it is our children who will pay the price. While our leaders will travel the world, build houses and spend a fortune, on elections and referendums that will have little to no positive impact for you and your children’s lives. Recent on-going media coverage should say enough, I personally cannot bare to hear of one more death or injury to another innocent Irish child, another suicide or the fear of my own untimely death caused be the demands and traumas I’ve endured at the hands of the HSE…my heart, body or mind will one day reach its limit…it’s again nothing short of a miracle I’m still here now, truth be told.
With all I had expected or not expected from Nat’s birth, I could never have expected the different effects he would have on us all. For all of this, I have learned that honesty is happiness and happiness is wealth. With all you have or do not have in this life, at the end of the day, your health is your wealth! Mental, physical and emotional. To those who have their health, mind it. To those who don’t, bless you and be not afraid. We are all made to suffer and like all things, it will, someday, end. So live, no matter the cost, live life and be happy. For us humans, each day can and will bring new beginnings and a fresh promise of hope.
It is our basic human right to make decisions for ourselves, yet I know now this right was taken from me, causing me and my family incalculable losses. It might be too late for me, but it is not too late for you to learn. For us, as a nation, to accept and change, for the good of our people, our country and our CHILDREN! I obviously have a lot to accept and have done so. This act of acceptance, the kind hearts, patience and understanding of others, has been my MEDICINE. I did all this in the knowledge that if we do not act, change now, it will ultimately be our children the sick and weak that will suffer. I learned the effects of this first hand. I would spare anyone else the lesson.
It has been a huge comfort over the years to sit and pen my memories. I do so with continued faith and hope that we will be heard. Take back what is our basic right to health and education. In years to come, we will put the mistakes of the HSE behind us. We try to look forward to the future, as it lies before us in a world gone mad.
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