Post
by carolejo » Sat Jun 13, 2009 3:54 pm
Hi everyone,
thanks so much for your messages of support, and for your good wishes & prayers.
Tuesday I had my regular midwife appointment. These are now essentially redundant as my antenatal care will be handled by the AMC (Academisch medisch centrum - the teaching hospital in Amsterdam) instead. Still, it's nice sometimes just to be treated like a pregnant woman, rather than somebody whose baby will be very sick. The AMC will do everything they can for us, obviously, but a 45 minute consultation there will by necessity involve 43.5 minutes of peering at a grainy black & white image on a screen, with little flashes of blue & red to show the doppler blood flow through Caitlin's heart. This means there will only be about 90 seconds left over to look at & talk about the whole of the rest of us. Anyhow, the midwives are being fantastic about this all. They have basically said "come & see us as little or as often as you want to. Our door is always open for you". Yesterday we also got a sneaky extra ultrsound to peer at Katie, and were able to watch her waving at us.
On wednesday we met the pediatric cardiologist, Dr C. She's south african and native-english-speaking, which helps. Her and Dr B (our gynecologist with specialism in prenatal diagnostics, also female) make an amusing double-act - they are so obviously great friends as well as colleagues. I know it's deeply unscientific & totally irrelevant, but I actually found I really like both of them.
We had quite a wait. The clinic was running about 2 hours behind by the time they got to us. Once inside, there was an cardiac ultrasound which lasted about an hour, followed by half an hour's explanation of the findings.
Firstly, it's better news than we had thought. Although Caitlin definitely has only 1 "pump" in her heart instead of the usual 2, her aorta (the main blood vessel which supplies oxygenated blood to the brain & body) looks to be well developed, which means this isn't full HLHS afterall. This will make her first surgery in the days after birth much less challenging & risky. In fact, the whole of the body circulation looks good, although it looks like the return flow might be draining back to the heart via 2 vein inlets, rather than the usual 1.
The pulmonary (lung) circuit is a bit more of a challenge though. Her pulmonary arteries (the blood vessels that take blood to the lungs so that it can receive oxygen) are very narrow. These may need to be widened with stents to encourage them to grow, although they usually do get bigger as you get older. The pulmonary veins (returning from the lungs) are a bit more of a mystery. The dynamic duo can see that there is a flow of some kind, but they can't figure out where that goes to! To be fair, my placenta is thick & right at the front, so image quality is not great and the plumbing in Katie's heart is destinctly unusual, to say the least! I think it must be hard enough to see these tiny blood vessels when you know where to look, but finding them when the anatomy is completely twisted around on its head must be akin to mission impossible. Anyhow, they'll carry on the search at our next visit, which is in 4 weeks.
We've also been doing a lot of reading, especially blogs written by parents of children who have single ventricle hearts, to see what their quality of life is like. So far, it looks encouraging. Yes, there are big risks associated with open heat surgery, and time spent on a heat-lung bypass machine, but it isn't all as bleak as we feared.
In short, none of this could be described as in any way "good". But on the other hand, this isn't the end of the world either, and the sky hasn't really fallen in. It will be a very long, very hard road and there are still many unknowns, but we are at least starting to gather enough data to work with. She will still require urgent surgery within days of birth to stay alive, followed by at least 2 other major surgeries in the first few years, but that first procedure should be a little less complex, giving her a better chance.
For now, we're holding on very tightly to the fact that she is currently safe & well - as long as the placenta is firmly attached, everything is OK. We rejected an amniocentisis to rule out cromosomal defects (there is often a link) as we don't want to take the risk of miscarriage that this comes with and it wouldn't change our decision to carry her to term anyway. All her other organs look fine, so that means we have a good chance that she's an otherwise healthy little girl with half a heart.
Basically, we'll take what we can get. If that's just 2 hours, then it's 2 hours more than we would otherwise have had. Hopefully it will be 30 or 40 years (current estimated life expectancy for someone who has undergone the full set of operations), but we just don't know. We do know that if she doesn't make it, then we'd like her to be an organ donor to help other children. We feel that way we can salvage as much "life" from the situation as possible. Hopefully it won't come to that though.
C. xxx
CaroleJo