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!
Monday 12 September 2011
What a week!
I have decided to start a 'blog' to document the journey we have somehow found ourselves on.
Here goes...
This time last week I was enjoying my pregnancy and looking forward to my 20 week scan, the scan took place on Thursday 8th September at 9.30am at Northampton Hospital.
This was to change the course of our lives, mine, my husbands and my daughters.
Having suffered a miscarriage in May 2010 at 10 weeks this pregnancy started with a fraught first 12 weeks, I was constantly on alert looking for signs of another miscarriage, I was neurotic about what I was eating and drinking, I can't say it was enjoyable, I was terrified every single day!!
...but the 12 week scan was a breeze, baby was alive and looked perfect!
We were so happy and really started to look forward to our future with a little baby brother or sister for Grace!
The next 8 weeks I began to relax a little, I even had the odd glass of wine (about 2 in total!)
Then came the 20 week scan, should we find out what we're having or not?
This went on for weeks, should we shouldn't we, anyway in the end we decided to find out!
I really wanted a boy and Alan said he didn't mind, (but I think he really wanted a girl.)
The morning of the scan I was confident that it would be a girl....we had picked the name Florence and pretty much thought it was a done deal.
To my complete surprise I got what I really wanted, a BOY!
The first part of the scan was routine, checking he had his arms and legs and a perfect little face.
The sonographer began to take a close look at baby's heart, she took measurements and kept going back to re-take them. Not a reassuring sign! When she said she was going to ask a colleague to confirm something I froze.
Alan and I looked at each other confused but I knew right away something was up.
Another lady came in and agreed there was a problem, we were told our baby's aorta was measuring small at 2.7mm. The aorta should be roughly the same size as the pulmonary apparently but that was measuring 4.3mm.
When the sonographer said she would be referring us to Oxford I burst into tears, what did this all mean??
We we're told to wait for a call from Oxford about our appointment.
So we went home, upset and confused but happy we we're expecting a boy, worried sick what was wrong with him.
Here goes...
This time last week I was enjoying my pregnancy and looking forward to my 20 week scan, the scan took place on Thursday 8th September at 9.30am at Northampton Hospital.
This was to change the course of our lives, mine, my husbands and my daughters.
Having suffered a miscarriage in May 2010 at 10 weeks this pregnancy started with a fraught first 12 weeks, I was constantly on alert looking for signs of another miscarriage, I was neurotic about what I was eating and drinking, I can't say it was enjoyable, I was terrified every single day!!
...but the 12 week scan was a breeze, baby was alive and looked perfect!
We were so happy and really started to look forward to our future with a little baby brother or sister for Grace!
The next 8 weeks I began to relax a little, I even had the odd glass of wine (about 2 in total!)
Then came the 20 week scan, should we find out what we're having or not?
This went on for weeks, should we shouldn't we, anyway in the end we decided to find out!
I really wanted a boy and Alan said he didn't mind, (but I think he really wanted a girl.)
The morning of the scan I was confident that it would be a girl....we had picked the name Florence and pretty much thought it was a done deal.
To my complete surprise I got what I really wanted, a BOY!
The first part of the scan was routine, checking he had his arms and legs and a perfect little face.
The sonographer began to take a close look at baby's heart, she took measurements and kept going back to re-take them. Not a reassuring sign! When she said she was going to ask a colleague to confirm something I froze.
Alan and I looked at each other confused but I knew right away something was up.
Another lady came in and agreed there was a problem, we were told our baby's aorta was measuring small at 2.7mm. The aorta should be roughly the same size as the pulmonary apparently but that was measuring 4.3mm.
When the sonographer said she would be referring us to Oxford I burst into tears, what did this all mean??
We we're told to wait for a call from Oxford about our appointment.
So we went home, upset and confused but happy we we're expecting a boy, worried sick what was wrong with him.
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