Oxford John Radcliffe hospital moved pretty quick and tried to get us in to see a specialist heart consultant on the same day as the 20 week scan! We couldn't get there in time so arranged an appointment for 6pm on Friday 9th September.
I told Grace as little as possible, just that one side of baby's heart was a little bit smaller than it should be and they needed to check it out, Grace is 8 so she kind of gets it. She's happy she's going to have a little brother and has promised she is going to be chief story reader!
Before the appointment we we're in good spirits, I said to Alan that my worst case scenario is they will suggest we terminate the pregnancy. My best case scenario was that they can fix our baby.
(Immediately before we went in we got a call to say our house had sold, months of worry about that particular problem gone in an instant, isn't it strange how things go?)
Anyway...we met with Dr Nicky Manning and she began a detailed heart scan of our baby, this took an hour, she was thorough and didn't really speak as she was working. She took a lot of data and told us to wait whilst her colleague joined her to view the findings, one thing she did say to us was, 'yes, your baby does have a heart problem.' I thought that was funny when she said that, probably because the situation was about as unfunny as you can get and probably because we already knew.
Dr Manning called us into her office...The Diagnosis.
The first thing she said is what I have been hanging onto all weekend, 'We have seen this before and it is treatable.' I was elated.
She went on to explain that our baby's condition is very rare, they see about 1 to 2 babies a year with this particular set of problems. 4 problems in total. He has an 80 - 90% chance of survival.
When our baby is born he will be put on Prostin and before he can come home he will need open heart surgery. We we're devastated at this news, our perfect baby boy is going to be very poorly indeed.
Dr Manning passed me a box of tissues, I may have to invest in a few boxes myself! She drew us a diagram of our baby's heart and of a normal heart. (I will scan it and post it onto the blog.)
The diagnosis so far is-
- Double outlet right ventricle
- Large subpulmonary VSD
- Transposition of arteries
- Likely coarctation of the aorta
Armed with this information we headed home. I sent out texts to close friends to explain the situaiton, it made me feel terrible, noone wants to hear this stuff, it's awful.
To say the support we have received is fantastic is an understatement, we couldn't be more grateful. Obviously our close families are upset but there is hope and that is what we have to focus on from this point onwards.
Baby is doing fine right now and will continue to do so as long as I am pregnant, his problems will start as soon as he is born so everyone knows it will be a rocky road in January 2012.
We have a while to prepare ourselves and a while to pick a name too, we did like the name Harry but somehow this doesn't fit with this baby. Harry was meant to be a happy, bonny, healthy baby. I want something with a bit more clout, something that will give our baby strength...hmm, that should keep us busy!
Hector!
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