Before writing this one, I want to first apologize. It is not easy describing a medical condition that you are trying to learn about at the same time. I am by no means an expert or claim to understand all the terms and issues, but I am working on becoming an expert :) I have provided a link below that describes it much better than me.
In HLHS, the heart's left side is underdeveloped and doesn't provide enough red blood flow for the body's needs. So you are basically born with half of a heart, only the right side works properly. In utero, the right side is compensating for the left side right now. Since the left side doesn't get much use, the valve stays small and begins to harden and thicken. We can already see that in the ultrasound pictures of our baby's heart. Our specialist believes there is nothing getting through her aortic valve already. So, blood goes into the left side only to have no where to go. So, it overflows into the rest of the heart. She also has the RAS issue. One of the openings in her heart between her left and right atriums is not open like it should be and is not allowing enough blood to get through. Our specialist thinks there is only a trickle getting through. So we have all this blood not getting through the left side, and it has nowhere to go because it has a hard time squeezing through the atrial septum because it is not opened like it should be. So, her heart is under a lot of pressure, and they believe it is most likely backing up into her lungs, which can cause major damage to her lungs in-utero. This is also not allowing all the oxygen-rich blood she needs to be dispersed to her body and brain. We need her lungs to be as healthy as possible when she's born so she can have a good chance. If we get into Boston for the in-utero procedure, they would put a stent in the atrial septum and relieve some of that pressure which would help her lungs not deteriorate. We won't find out how her lungs, etc. have been affected until she finally arrives.
These defects are not correctable. They have a three-part surgery called the Norwood procedure for HLHS babies. All three procedures take place by the time they are 5 years old. Our daughter will be having these surgeries. If we do not get into Boston for the stent, then she will most likely be taken straight into surgery after birth to put a stent in her atrial septum. Without doing that, she would not live but a few hours. After that surgery, they would look to do her first open heart surgery to re-plumb her heart about a week after birth, given her lungs are healthy enough. Her second surgery would be at 6 months, and her third would be somewhere between 2 and 5, I believe. This re-plumbing of her heart will eventually wear out, and she could need a heart transplant by the time she is 20 years old. The oldest survivor right now with HLHS is about 31 years old.
There are still so many unknowns due to the fact that I still have nearly 18 weeks left in this pregnancy, and we just have to wait and see how her heart grows and whether or not things get better or worse.
Here is a great link to read more on HLHS http://www.childrenshospital.org/az/Site502/mainpageS502P0.html
No comments:
Post a Comment