~The Speth Family~: HLHS

Wednesday, August 12, 2009

HLHS

We spent most of this morning at Primary Children's Hospital in a crash course on Hypoplastic Left Heart Syndrome. It was very informative - maybe too informative :) I feel like I went to my first day of a university course where the professor has laid out every single assignment I have to complete for the rest of the semester all at once - a little overwhelming! I think I may have been happier taking one day at a time :)

All of the info is starting to sink in now, but I'm not sure I can regurgitate it all yet - here goes...So we started with a fetal echo cardiogram so the pediatric cardiologist could verify the diagnosis and then he took us into another room, sat us on a nice comfy couch and three more people joined him. The lecture was jammed full of info, drawings, and questions, but here is the main gist- the baby has two atria and only the right ventricle. The left ventricle exists, but its a sliver and the valve that leads to it didn't open so it is completely non functioning and basically useless. Since this is the ventricle that is supposed to do the majority of the work after the child is born, the right ventricle will have to compensate, and will therefore wear out much, much faster.

When the baby is born, they will give it some medication to keep the PDA duct open and then three to five days after birth they will perform the first surgery. This is the big one and the scariest. There is a 75% survival rate (I hope we're not in the other 25%). They have to sew a patch into the aorta because its way too small and re-route a couple of other things. Its open heart surgery and they will leave the baby's chest open for a few days in case there are complications and they need to go back in. This leads room for infection and other things, but we won't go there unless we have to.

The baby will stay at Primary Children's for four to six weeks (shorter than Allie's stay) and leave without monitors (at least I got a heart monitor with Allie so I would know if she stopped breathing). The baby has its second surgery at 4-6 months. It is less invasive and has an 85% survival rate. The third and final surgery is done at 3-5 years and the child should have no problem with it. If the baby makes it that far it will have a much better chance of living to its teenage years - after that its all up in the air. The child could try to get a transplant, but hearts are scarce and only last about a decade anyway.

So those are the basics. There's a LOT more, but most of it was about insurance, hospital rules, etc... It sounds like there will not be many visitors allowed unless the baby is not doing well and they expect it to pass away.

I get to be on progesterone to prevent another early delivery. I hate shots! But at this point, what am I whining about? One of my best friends - Jen - is a RN so she came over this afternoon to teach John how to give them to me. Despite my wimpiness, it went well. She gave me the shot this week - I guess we'll have to see how John does next week... UGH!

The tech tried to look to see the sex of the baby, but couldn't get a great look. She said it is most likely a boy, but she usually only looks at hearts so she could be wrong :) That's what we were thinking as well after the last two ultrasounds so we're going with that for now :)

The nurse practitioner gave us a website for those of you who are struggling and want to know everything you can...www.pedcardiology.utah.edu and click on fetal heart clinic for a list of abnormalities, or click on http://www.pted.org/?id=singleventricle5 and scroll over the picture for a look at what takes place during the first surgery.

My next echo is in six weeks - the 23rd of Sept. so hopefully our posts will be a little more fun until then

1 comment:

Tyler & LauraAugust 13, 2009 at 2:43 PM
We love you all, and we are praying for you every day!! Good luck with those shots :)
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