There's a lot to share today, and I want to do it in a way that people can understand, so this is a long post I'm afraid. Bear with me, hopefully by the end you'll have a better idea of what's going on, even if I'm still trying to work it out myself.
We went to Hobart yesterday for the tertiary scan. And again a small part of me expected them to tell us they'd got it all wrong. Why do I keep doing that?! It never works out that way does it? I have to say though that I wish we had a facility like that up here, the staff were all so friendly and welcoming, and both the sonographer and radiologist talked to us the entire time and explained everything they were seeing.
Before we get into the bad stuff, let me tell you something good. We are having another little girl. The sonographer wasn't certain, but the radiologist was able to say straight away when she looked. So Sophie is going to have a little sister.
The sonographer took a lot of pictures and explained that she could definitely say there is a cleft. But it's worse than we expected. Coco has a bilateral cleft lip extending into both palates. If you run your tongue over the roof of your mouth, that's your palate. The hard palate is the bit thats hard (duh!) and the soft palate is that bit at the back where it's all squishy. So our baby's cleft goes right through the lips and back into that soft bit. Here is a picture I found on google that shows what the lips might look like:
Because the cleft in the palate goes so far back, there is a very high chance that she won't be able to feed without help. Even the special bottles might not be enough, and chances are she will need to spend some time in the special care nursery being tube fed while we try to figure that out. I may even have to come home without her, which terrifies me.
The radiologist broke some even scary news than all of that though. It seems that with the bilateral cleft like the baby has, rather than the unilateral cleft that Drew had, there is a much higher chance of it being caused by other chromosomal abnormalities such as trisomy 13 and trisomy 18. The radiologist mentioned that we might want to do an amniocentesis to find out, but I brushed it off at the time, mainly because both Drew and I were chromosonally tested earlier in the ear and both came up clear. I figured that that meant we were in the clear now.
This morning though we got a phone call from an obstetrician that works with Doctor Hingston. As it turns out Doctor Hingston is the only OB on the north west coast that is able to preform amniocentesis, and as chance would have it, she is going on holiday after tomorrow. So I need to make a decision between now and 9am tomorrow morning about what I'm going to do.
I said originally that I wouldn't do it unless it changes our pregnancy and birth care. We turned it down with Sophie when they expected problems at 32 weeks. But the lady I spoke to today thinks that we need to know in order to organise for the rest of the pregnancy care in the high risk clinic, and to arrange for the birth. So I don't really seem to have much choice.
I'm really scared of the amnio. There's a 1 in 300 chance of going into early labour once you have the procedure done, and we all know how me and statistics like that don't get along too well. I asked about Doctor Hingston's success rate, and the lady I spoke to reassured me that she has never had a single complication in the entire time she's been doing them. So that's something.
I haven't completely decided to go ahead with it. I've agreed to meet with Doctor Hingston in the morning, and I can ask her as many questions as I like before I decide. I just don't know how I'm meant to decide that's all.
I feel completely overwhelmed by everything. To be honest, I really don't know how much more I can take. And how much should I be expected to take anyway. Surely enough is enough already?
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