The bad news began on the way to the labour room.
“What are my chances of a live baby?” I asked.
“About 30/70”, was the reply.
The date was October 29th, 1996, and I was 26 weeks pregnant.
After the birth she was whisked away to the Neonatal Intensive Care Unit (NICU), and life with a severely premature baby began. Problems on problems, diagnoses on diagnoses, crisis after crisis. I watched other babies go home, while she was transferred to the local children’s hospital.
It seemed that few people thought we would bring this baby home: an urgent baptism was advised, and we only received a handful of cards. But bring her home we did.
As time passed her medical problems eased, but the assessment of her physical and intellectual disabilities became devastating, and there was an assumption that she’d never be able to do anything, and residential was suggested more than once.
Of course, I assumed she’d be able to do everything – with the right interventions. I assumed she would learn to walk and talk, I put her name down for the same schools as her big sister, and I still have the bittersweet letter from her sister’s secondary school offering her a place. We were all wrong. She confounded all our expectations in her own unique way.
She may not walk unaided, but she loved using a walker as a child – no suitable adult one has been found.
She may not talk using words we can distinguish, but she is very vocal and expressive and definitely makes herself understood!
She may need nappies, but she also uses the toilet and is so proud of herself when she does.
She didn’t go to mainstream school, but she went to the best special school in North Dublin (I may be a bit biased).
She is not in paid employment, but is holding her own in a mixed ability transition programme for young disabled adults – no sitting in circles with a groups of docile non-verbal adults in wheelchairs listening to someone strumming a guitar. Not my daughter.
21 successful years.
21 years of smiles, pure love, patience, calmness and joy. Living in the now, no regrets, no malice, no grudges.
The girl who lived, and still lives, and who inspires me every day.
Happy Birthday B!
And this is how it all began in case you missed it the first time round…
Born Too Soon
It was October 1996 and my then husband and I both had great jobs, a wonderful little girl, and another baby on the way. We has just moved into a beautiful old redbrick house near the City Centre. It needed a a lot of TLC, but we were young, we had plenty of time, didn’t we? Well, we got our answer just three days later when our whole world began to change.
I was having lunch out with a friend from the office when I began to feel that something was not quite right. Very quickly I was bundled into a taxi and packed off to the Maternity Hospital, briefcase in hand. There I was marched past the snaking lines of bottom-shuffling women, who I don’t think were too impressed, and straight in to see the doctor. After a couple of tests, I was told that I was losing my waters and was likely to go into labour within 24 hours. I was 24 weeks pregnant.
I remember crying and friends visiting and then….nothing. I did not go into labour and it was like the hospital did not know what to do with me. I was parked in the prenatal ward and left to wait. I watched other women come and go. For some everything went well and their babies were delivered safely. Other times I saw weeping families and did not dare ask why. Some women who were there when I arrived were still there when I left: some spent most of their pregnancy walking the hospital corridors. I made one very good friend who arrived on the ward during my second week there and we are still in touch today.
Meantime my hormones were in overdrive and I did weird things. For some strange reason the hospital catering staff only served tea, but there were two coffee machines. One dark morning, both were not working, and I went back to bed, pulled the curtains and refused to come out, until someone got me a mug of coffee. I missed my other daughter horribly, and very quickly decided that one hour a day visiting was not enough – so I negotiated day release! I only lived a 5 minute drive from the hospital so they agreed that I could go home in the afternoons once the baby seemed to be okay. Just in case you were wondering: I was a public patient and all the care up until I went into labour was fine: I was regularly checked, I was given the most disgusting injections ever to mature the baby’s lungs, and the staff were supportive and helpful.
On the second Friday there were signs that things were starting to happen and an infection was mentioned. For whatever reason, I don’t remember being given any medication for this. Soon after I started to feel mild pains – and so did my friend – and she kept my sanity intact as we struggled through the weekend together. On Saturday I asked to be checked again, but was told that I was not in labour, same on Sunday, same on Monday. The SHO (Senior House Officer) checked me on Monday morning and said again that nothing was happening. Pains continued and sleep became a distant memory. By Monday night I was miserably tired and almost felt abandoned when my friend was wheeled down to the labour ward by the SHO. So some pethidine was prescribed, and it made me feel a lot calmer. I just lay and listened to music with my eyes closed. Of course the staff assumed I was sleeping. But the pains continued to get stronger and about 3am I called for help. I was checked and suddenly people started running around, finally they were admitting that I was in labour.
Initially everything seemed to be going well, then things started to go wrong, you could see the worried faces, but as there is no agreement over what happened, all I can say is that the consultant was called in the middle of the night, no caesarean was performed, and the SHO apologised for what happened.
By the time my baby was born, there was a whole team of people in the room waiting to work on her. The shocking thing was the silence, there was no new born cry, my baby was just whisked away. “Is it alive?” I asked… and it seemed a long time before I got an answer.
Failure To Thrive
My baby weighed 875gms (1lb 15 ozs) and her Apgar scores were fairly good considering, but she was rushed straight to the NICU. Everyone left the delivery room. The drama was over, but I was still in shock. I went for a shower – the upside of no epidural – and then up to the ward. Seven pair of curious eyes looked at me as I walked in with no baby. I went to the bed, pulled the curtains, and prayed for sleep.
There was one person that I was very happy to see – my friend from the pre-natal ward, whose baby was also in the NICU. And so we went down together to see them. B was on an open incubator, she was so thin and tiny, not like a baby at all. I couldn’t touch her, I couldn’t hold her, I couldn’t help her in any way. I felt sooo useless, yet I knew that I totally loved this baby with everything I had and I just willed her to live.
NICU was a confusing scary place. very time an alarm went off I would panic, thinking that my child was in danger, while the staff were more relaxed. And I soon realised that alarms sounded almost continuously – you just had to stay calm. There was a whole new language to learn: apnoea monitors, sats (as in oxygen) monitors, electrolyte levels, feeding tubes. There were procedures to get used to, visiting times and the *joys* of the milk expressing room. One thing did stand out. On the label with all her details was the phrase ‘premature footling breech birth’. I’d never heard of this before, and it was only later that I discovered the significance.
I went home after a short sleep, and fell into a new routine of home and hospital – work long forgotten.The days passed in a blur. There was an early morning phone call when things went wrong, she had a bleed, but there was no noticeable change in her. I cried, but none of it made any real sense, even after reading all the leaflets we were given. Had I done something that could have caused this? At 3 months pregnant I’d accidentally drank some day old milk in my coffee. Could that have affected her development? Or what about the sprained ankle a month later?
My eldest daughter was in shock as well but seemed to adjust faster than her parents. She was given a colouring book for siblings of premature babies, and from the very start she made a big fuss of her little sister. In those days siblings were allowed into NICU and she would sing and talk to B – she even asked for an incubator for her dolls for Christmas. Santa did not manage to find one, but he did get her a doll-sized set of syringes and feeding tubes.
Days turned into weeks, and I watched the other babies pass out my daughter: they were promoted to a lower dependency room and my friend’s baby went home. We weren’t really told why B was still in NICU, just that she wasn’t thriving. There was only one thing obviously wrong: her right hand was twisted, but we could live with a damaged hand. We were just so glad that she was alive.
Around this time, we were called to a meeting with a neurologist. Most of what she said went straight over my head. I was just so tired and scared for my little baby. The neurologist mentioned cerebral palsy, in a very casual way as I recall. She just dropped it into the conversation. Again it made no sense. All I knew about cerebral palsy was the film My Left Foot, and surely B wasn’t like that.
In the meantime I had to plan for Christmas. It needed to be special for both of my children. Santa even found his way to B’s incubator and left a little teddy for her. I bought the smallest Christmas dress in the whole of Dublin – it was for a 5lb baby and reached nearly to her ankles. We all visited, and took turns in holding her carefully, to avoid dislodging all the tubes and pipes: she was still so small and fragile.
Foolishly I made a pact with, well whoever is listening up there, that if B reached 3lbs by Christmas Day, then everything would be okay. Sadly, she didn’t….
Living in the Hospital
After Christmas, everything began to look more hopeful. B was promoted from intensive care to high dependency, and began to feed and take bottles – my milk dried up after 6 weeks so breast-feeding was not an option. She still had breathing problems, heart irregularities, possible sight problems, and electrolyte imbalances, but apart from that, all seemed to be going well. Three weeks later she was moved to the Paediatric Unit, usually the last stop before home, where babies get used to a routine of sleeping and feeding. But not my daughter. New problems emerged. Spiky temperatures that did not respond to antibiotics. Wet nappies but mild dehydration. She was so small and placid that I missed these signs, I was not aware that anything was wrong. But I have to try not to think about how much she might have been suffering: she would have been dehydrating between feeds, how horrible is that for a tiny baby? It seems that the nursing staff were baffled too. It took a weekend locum to spot the symptoms of a rare and dangerous condition – diabetes insipidus – and within hours she was transferred to the local children’s hospital. I don’t know who the locum was, but she probably saved B’s life, or at least prevented her disabilities from getting worse.
And so began two years when the local children’s hospital became our second home. During that time B’s life hung in the balance many many times and we never strayed more than a 30 minute drive from the hospital. I don’t think I could say a bad word against the place. Her consultant always looked on the bright side – “just don’t let her drink too many pints of Guinness when she’s older, and she’ll be fine,” – and worked with me to bypass hospital admin: he let me type up urgent letters and faxes. He would sign and stamp them and I would get them in the post. Even now she is remembered by hospital staff and on the very rare occasion that we visited A&E in later years, someone always came down to say hello.
The ward was a narrow corridor with lots of tiny rooms, one for each child. Room for a cot, a chair, a washhand basin and little more. Utilitarian, they made me think of monk’s cells. It is the sound of the ward that I will always remember: it was never quiet. Even when the babies stopped crying, there would always be the beep beep beep of the equipment, the urgent alarms on the sats monitors*, the whoooosh of feeding and suction machines, and the low murmur of nurses’ voices.
The saddest part was that some of the babies had no visitors. Perhaps their parents found the problems facing them were too overwhelming. I never knew: it was not spoken about.
But even with all the fear and worry, for me it was a place of hope. A place of transition. Another step on the long road home.
For two months the wonderful doctors and nurses battled to stabilise our tiny baby. Bloods were taken almost every day, until she looked like a junkie and became terrified of anyone in a white coat. She enjoyed her bottles, but problems with reflux and breathing were on-going, and I still remember the day when she choked on her milk and I screamed as she turned purple in my arms. Staff came running from all directions and whisked her off to be resuscitated. I have never been so afraid in my life and my eldest daughter had to go home with her play-school teacher that day as I was in no fit state to drive.
Yet at the end of March it was decided that we could try and manage her at home. Lots of training was provided, and a huge box of equipment and medications. Everything had to be carefully recorded and monitored, including her input (everything she drank) and output (wee and sick) and I had to weigh her every day.
I was so happy to have her at home and took her out everywhere in the pram and proudly showed her off, even though she looked a little odd, with her huge head and her tiny arms and legs. She was happy too, and she showed it: a few days after she came home I was cuddling her in the rocking chair after a feed when she looked up at me, opened her eyes wide and the most glorious smile lit up her face. I burst into tears. I had not known if she would ever smile, so it was just amazing. Once I stopped crying I picked up the phone and rang my Mum. Then I cried again! In that moment I really believed that everything was going to to be fine….
And, of course, it was.