The Disability Diaries (The Life of J1) : The Birth and The Beginning of Our Journey

For those of you that have already read the Page on my Blog called 'My Birth Story - J1' most of this you will already know, but I feel it is important both for myself as the author and anyone who happens to follow this feature to start right from the very beginning.


I found out I was pregnant, whilst I was a mature student studying a Law course at University and as far as I knew from all the check up's and appointments was having a healthy and text book pregnancy.  I had a large and supportive network of family and friends and was looking forward to being a fabulous single mother!

12 week scan

20 week scan, all perfect

Christmas Day 2003 was my predicted due date and I was intending to work as far up to that point as possible.  So it was a shock when on 2nd November, as I finished watching a movie at my parents house my waters broke.  Of course I wasn't really aware of that at the time, I thought I had suffered my first 'bladder accident' due to the baby getting bigger, but when a visit to the bathroom resulted in a continuing dripping sensation a phone call to the local hospital resulted in a trip to the bigger hospital 30 minutes away.

I had no idea when I left my parents that night that I would not be returning home for 3 weeks, and when I did I would have a brand new premature baby to care for.  I was completely ignorant to the risk that was facing me, I had not considered I would need to know about premature births and babies and what SCBU stood for.

On arrival at the hospital I was given steroid injections and told that the hospital did not have space in the Special Care Baby Unit and the Maternity Ward, which in a case like mine, 8 weeks premature, they must have - 'just in case'.  They told me that they were calling around to see who could take us, but it could take some time. 

We were eventually moved to a hospital about an hour away, which was all very exciting at the time.  I think because I hadn't started to have contractions I didn't even realise that I was 'in labour', I was still thinking 'Oh dear, little leak'.  I was told I would be given another set of steroid injections and a scan in the morning while my mum was sent to collect an 'overnight' bag for me.  At the time I was more concerned that I would need to get instructions to the girl who was going to have to cover my job for a couple of days.

For three days I was monitored, I had the scan which showed that there was still water around the baby, plus I had stopped leaking so there was hope that the water may replenish itself.  The last visit from the 'morning rounds' doctor instilled me with hope, when she said that if the waters held I would be allowed home the next morning.

The waters did not hold however, in fact that same afternoon I felt them 'pop'.  I was put on the 'belly monitor' and my brother came for an evening visit.  Just as he was leaving the mid-wife stopped by to check the babies heart-rate trace and quietly said to my mum that she should perhaps stay a little longer and that she was going to have the Registrar pop to see us.

What this meant was that the trace was showing that the babies heart rate had started dipping on a regular basis and I was transferred to the Early Delivery Ward.  Still completely unaware that in a matter of hours I would be delivering my baby 8 weeks early, I actually asked the nurse if I need to take my stuff or if I would be back.  I should have sensed the pity in her eyes when she said 'No dear you need to take everything with you.'

On arrival at the ward I was again hooked up to the 'belly monitor' which was monitored directly out at the nurses station by the Registrar.  Several times I was updated with the news that there had been no improvement until the inevitable visit; 'for the safety of the baby we are going to have to deliver now'.  I was told that the nurse would be in to 'prep' me and it was at this point I realised that this was B.I.G and S.E.R.I.O.U.S.  I had the feeling like I was tumbling through the sky in a plummeting aircraft.  I had to just hope.

As I was prepped for surgery I realised that as fantastic as my mum is she isn't the best at covering her nervousness in stressful situations but that made me calmer.  Until they came to wheel me down to theatre and half way out of the door someone shouted along the corridor 'No, No, take her back a bigger emergency has come in'.  I was taken back into the small holding room, quivering and fearful with the words 'Spinal Block', 'Major abdominal surgery', 'Risk to the baby' echoing around my mind.

After what seemed like an eternity I was finally taken down for my emergency Cesarean and at 3.02am on Thursday 6 November 2003 I became a mum to a 4lb 9oz baby boy.  I wish I could say a 'healthy, bouncing baby boy' but he wasn't.  All I saw in amongst the throng of bodies that were surrounding my little scrap was a grey, floppy doll like baby being vigorous rubbed and maneuvered before he was wrapped up and I was told he had to go straight to Intensive Care.  The only piece of hope that I was left with as I shook uncontrollably on the operating table was the faintest little warble of a cry as the door to theatre softly closed.

A flurry of activity then occurred as I was 'put back together' and taken to recovery.  There was concern that my heart rate and temperature were running high so it seemed I was a long time before I was taken to the Post-Natal Ward, where I was told that my baby boy was 'doing well' although was on CPAP (Oxygen).

In that bed that would be home for the next fortnight, I tried to come to terms with the fact that I had just delivered a baby and become a mother.  The thing that was bothering me most was that I had to pick a name, it seemed like an enormous task and one that I couldn't undertaken until I had seen him.  So with the drip still in my arm and catheter in I was taken along 'but not for long'.  I was warned that the CPAP mask was large and cumbersome on a baby so small and to not be shocked by it.  However, as it was 13 hours since he had been born when I arrived, he was off of the CPAP and was a perfect little looking baby, albeit with tubes and monitors, no fat and what seemed like huge feet!  I also discovered on closer inspection that he didn't have nails or eyebrows!  But he was the most beautiful thing in the world to me.

14 hours old at 32 wks gestation

I decided on a name and had visitors as I would have done had I delivered him normally, but it was hard being on a ward where all the other mum's had their babies in a cot next to their bed.  I felt torn, having had a c-section I was exhausted and in pain and was told to rest, but I just wanted to be by the incubator with my baby inside.

Everything was huge on him, inc nappies!

We had a relatively smooth run in Intensive Care and quickly moved 'up the ranks' into High Dependency and then Special Care where he was moved to a normal open cot.  No one spoke of any potential problems.  I had been told not to expect him to come out of Special Care until his due date and had mentally prepared myself for that and the travelling back and forth daily (we had been moved by this point back to our local hospital because a bed in SCBU was available for him), but he progressed quickly and started to bottle feed well.  I was encouraged to give 'Kangeroo Care' which was the highlight of my day. 

Kangeroo Care 'skin to skin' contact and a permanent look of shock

After about two and a half weeks I was told that as he was stable and feeding well I could spend a couple of days at the hospital in a private room and care for him on my own as I would at home, but with the hospital nursing staff on hand in case he wasn't ready.  After successful completion of those few days we got the wonderful news that we would be allowed home, just three weeks after being born, five weeks earlier than they had predicted. 

Tiny but going home

I set about life with a newborn as all new, first time mothers do, with trepidation.  Everyone commented, obviously, on how tiny he was but I didn't have another baby to compare him to so it all seemed very normal to me.  It was like having a newborn for an extra long time.  At the early checks the health professionals kept on repeating that I shouldn't expect him to reach milestones when I would 'normally' expect and to not expect to much too soon.  But I didn't know what to expect at all, having very limited contact with any babies so alarm bells did not start ringing with me until, probably later than they should.

It was only the fact that a very close friend of mine had delivered a full term little boy in September 2003, that at 6 months old I started to notice that my baby wasn't even holding his head up, where as her little boy was sitting up well.  I wasn't expecting my baby to be able to sit, I was doing as I had been advised to and following the guidelines of what a 4 month old baby 'should' be doing.  And holding his head was one of them. But anytime I raised this, as much as I didn't really want to, I was told I was expecting to much of him.  I think that everyone was a little thrown by the fact that he was feeding so well.

I also had concerns that he didn't seem to focus very well, but as part of the aftercare of a premature baby, especially one that had received oxygen after birth an eye test was par for the course, and it did transpire that he would need teeny, tiny baby glasses.  This I didn't think too much of and he looked damned cute.

However, at 11 months I finally had to take a stand and requested a special visit from a new health visitor because he still was not holding his head up, he was completely floppy in his torso, he kept his hands clenched in fists up by his chin and had developed a really high pitch scream.  The visit from the health visitor coincided with a programme I happened to watch focusing on babies with Cerebral Palsy.  Cerebral Palsy, I didn't even know what that was.  I was soon to find out I would learn a lot about it.  As I laid on the sofa watching the programme I suddenly started thinking 'My baby does that, hmmm, my baby does that too' and when the mention of a high pitch scream was discussed I stared at the television and just knew.

I cried that night, for hours.  The first of many nights, days, hours of tears.  Such an enormous thing doesn't just sink in.  And of course I hadn't had a formal diagnosis so there was still that 1% of hope I tried to tell myself.  But I knew really. 

As it turned out I never got a 'formal diagnosis' day as such, but that is what I will focus on in next weeks feature.