Saturday, 8 January 2011

Our Worst Fears and More

The journey to the hospital was horrible.  I had butterflies in my tummy the whole way, I think we must have talked through every possible scenario but decided that there was no point until we knew what we were dealing with.  When we arrived, I felt sick and gripped Lee's hand tightly as we walked into the waiting area.  I couldn't help but look around at the other women and wonder what was the matter with their babies., wondering if their problems were as bad as I feared ours to be.

The specialist scanned me for 40 minutes - maybe more.  She had another Doctor with her - I think he was training as she seemed to know more than he did and was leading the scan.  I remember the look of absolute worry on Lee's face.  He looked sick.  I felt it.  As I lay there, I just kept hoping they'd made a mistake at Leighton.  More than anything, I wanted her to turn to us and say that she didn't understand why we were sent and that everything was fine with the baby, but of course she didn't.  She talked all kinds of medical jargon to her colleague for the whole 40 minutes, non of which I understood but it didn't sound good.  On the other hand, it didn't sound bad either, I guess when you do a job like they do, you just state the facts, no emotion attached.  After she completed the scan, she confirmed our worst fears and more...

The Doctor sat us down and talked us through what she had found.  It was worse than we could ever have imagined.  Our baby had a complex heart abnormality, a bi-lateral (both sides) cleft lip and palate, part of his brain was smaller than it should have been and he had a sublte hand abnormality.  She spent ages explaining the heart complications.  In a nutshell, our babie's tubes and valves were all plumbed wrong.  She told us that if the abnormalites weren't linked to a syndrome, then in an attempt to correct the problems, the baby would have to have open heart surgery as soon as it was born, with only a 50% chance of survival.  That would then be followed by another open heart operation within about a month, still with only a 50% chance of survial.  Following that, the baby would have to have another operation at the age of 1 with about a 70% chance of survival.  If the baby survived these operations, his life expectancy wouldn't be great.  In addition, he would have to have an operation to correct his cleft lip and palate - trivial by comparison really.  With all these serious complications, the Doctor was doubtful that the baby would even go full term and if it did manage to go full term, that it would probably underweight.  However, the further we got into the pregnancy, the chances of us losing the baby got smaller.

The Doctor explained that all these complications were associated with a syndrome.  She didn't know which one, but the only way to find out was to have an amnio.  I wasn't keen on the prospect but she explained that the risk to the baby was relatively small and that it would give us the knowlege we needed to understand exactly what we were dealing with.  It would help us to be prepared if and when the baby was born.  If we chose to terminate the pregnancy, then time was of the essence.  She advised that we have the test there and then. Lee and I discussed what we were going to do and decided that we would be far better knowing exactly what the problem was and to try to come to terms with it, than to spend the next 4 months worrying about it may or may not be, so we went ahead with the test.

The journey home was miserable and very teary.  We just didn't understand why this was happening to us, but why not us I guess?  We went through every possible scenario.  If the baby didn't have a syndrome and went full term, was it fair to put him through those awful operations, how would it affect Phoebe if one of us had to permanently live at Alder Hay for the best part of a year?  What quality of life would the baby have? Could we ever consider a termination?  We asked ourslves 101 questions, none of which could be answered until we had the results of the amnio.  We just had to wait......

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