Tuesday 29 November 2011

Jake's Story - Part 1

My friend Mandy submitted this story to me for World Prematurity Day. The response I had was over- whelming so I decided I would post this story at the end of November to mark the end of Prematurity Month. Here Mandy tells the story of her pregnancy, and the birth of her son will be in part 2 tomorrow

Our story of prematurity is all down to PROM (premature rupture of membranes)  I have chosen to focus on the pregnancy rather than our journey through NICU.

We don't know when Prom happened to us - I have guessed at 17 weeks as that is the time the doctors presumed it happened. It could have been much earlier however we just know it was between 12 and 18 weeks. I hope this story helps someone going through this horrendous time. Please feel free to contact me. Apologies for the length of the story but I know from reading others that details are important when you are in this position ...

On December 13th 2006 I found out I was pregnant. After several months of trying to conceive we were absolutely delighted. The first few months of my pregnancy were uneventful, just the normal morning sickness and tiredness. When I reached 18 weeks I received a phone call which was the start of the most terrifying time of our lives. It was a nurse to say our triple test results indicated that our baby could have spina bifida and we would need a scan later that week to find out. That Friday we went to Pontefract for the scan and after about 20 minutes of scanning the radiologist went out the room. When she came back she said that we needed to go and see a midwife downstairs in the day unit. I was now beside myself with emotion although when we got downstairs the news was fairly inconclusive. The midwife said that the scan showed the baby had hardly any amniotic fluid surrounding it and they could not see clearly so we needed to be referred to a specialist in Leeds. The next appointment was the following Tuesday. After a very sleepless weekend spent reading up about low amniotic fluid we went to Leeds feeling very pessimistic. All the internet sites we looked at gave a very poor prognosis for a baby in low levels of amniotic fluid so early in pregnancy. I read that a way to help raise these levels was to drink as much water as possible. In our mind this was the only way I could help this unborn baby we already loved so much survive. So for the remainder of the pregnancy I drank between 3 and 5 litres of water a day.

Jake at 12 weeks

At LGI the consultant scanned me and the news was not as bad as we were expecting. Our baby looked perfectly fine to her (no spina bifida) but she could still not see very clearly as the fluid levels were still low. She was not worried about this, however, and said they would keep a close eye on me but they thought the outlook was not too bad. We left feeling quite positive with our appointment booked in two weeks. In these two weeks we got back to some normality and, as a teacher, I returned to work. I had taken the few days off between the last two scans as I didn’t feel emotionally able to cope with work.

When the day arrived for the next scan we were quite relaxed and we decided that my husband didn’t need to attend this scan as he was using up his holiday allowance extremely quickly! Accompanied by my Mother in Law I went to Leeds on the train and back to LGI. As soon as the consultant began the scan I knew something wasn’t right, the doctors mumbled between themselves before finally telling me there was hardly any fluid again around the baby and this was very bad news. We were told that there were three possible causes of low fluid levels and they needed to find out which one it was. We were told that the first thing they needed to do was a chorionic virus sampling (CVS) test to rule out a genetic problem with the baby. Earlier in the pregnancy I had been opposed to any such testing but now it seemed like a necessity. I rang Dean (my husband) in tears and we decided I would have the CVS test done there and then. I was terrified that our baby would be harmed and we were very lucky that the procedure was uneventful and the following day the results came back showing there were no genetic problems. Another cause of low AFI (fluid levels) could be lack of kidney function or bladder problems but again the scan had shown this not to be the case.

Jake at 18 weeks

We now had a two week wait until we saw a consultant. In this time we were both confused as to how I could have low fluid levels as the only remaining possible cause was premature rupture of membranes (PROM). We were sure this wasn’t the case as I would have known wouldn’t I? The day finally arrived for the consultant appointment at Pontefract. We naively presumed that this would be a very quick appointment as he had never scanned me and did not really know our history. We guessed (wrongly) that he would just say the consultant in Leeds at the next day’s appointment would give us details and put a care plan in place. So considering this we decided Dean should go to work that day and have the next day off for the important appointment. This was a bad decision, which we both regret now. The consultant that day absolutely devastated me when he told me the chances of us having a healthy baby were very slim and the best option may be a termination. At this stage I was 23 weeks pregnant and our baby was moving around. He also said that I was now given the diagnosis of PROM and as such I was at a high risk of contracting a serious virus, which could harm the baby and make me infertile. I asked as many questions as I could think of through my tears and my Mum was a fantastic support. The consultant said I could go home to ring Dean and make my decision but they would get me into labour ward that day to deliver if I decided upon a termination. I was adamant that I would never terminate this precious baby but the prognosis for our baby was so bleak. We were told that he would definitely be premature and probably within the next week or two, he would probably have pulmonary hypoplasia and he would probably have many limb abnormalities due to being so squashed.

Devastated at the news I went home. I rang Dean straight away. All I could say was “they want us to terminate but I’m not, they have said the baby will probably die.” Dean came straight home, equally distraught. When he got home my Mum explained everything that had been said. At this stage our opinions began to differ for the first time. Dean said he had to think of me and if I was at risk of contracting a virus, which would not only make me infertile but could threaten my life he had to prioritise me. These factors never crossed my mind. This baby was my priority and there was no chance that I was having a termination. Dean was very opposed to terminating the pregnancy but felt like he was stuck in the middle and did not know what to do. We spent a long afternoon and evening discussing our options, crying and researching on the internet. In the end we decided we would wait to see what happened at the scan the next day and get a second opinion, thank goodness we did. 

Jake at 19 weeks

Mandy's story continues tomorrow.....


  1. I've read Mandy's story on Bliss numerous times, but what her and her husband went through still brings tears to my eyes, will def read tomorrow x

  2. Oh this is so sad but now I have to read what happened next - I'll be back tomorrow x