After explaining in depth with a heart model the different parts of a healthy heart, a heart with defect, and a heart in utero, our Dr. said that we were now more knowledgeable than 95% of the people in the building about the heart. I’m going to do my best to regurgitate what I’ve learned (knowing full well that people with a medical background may read this and critique…).
Here are some basic terms and things that are helpful to know if you’re tracking this situation:
Pulmonary=referring to the lungs
Stent=chicken wire like thing
The heart has 4 chambers:
*2 receiving chambers: Left and Right Atrium (just like an Atrium in a church….don’t you LOVE pneumonic devices??)
*2 pumping chambers: Left and Right Ventricle
Our baby’s pulmonary valve is blocked, therefore the right ventricle (and tricuspid valve) are not growing properly. She has been diagnosed with Critical Pulmonary Stenosis, but it looks like it is turning into Atresia. Without getting too technical, there are surgeries that can be done to correct this. We won’t know which route we need to take until after the baby is born. The big question that needs to be answered after she comes out is: HOW ADEQUATE IN SIZE IS THE RIGHT VENTRICLE (and tricuspid valve)?
1. If it IS adequate enough…can this just be corrected with a catheterization?
2. If it’s borderline…can we try to stimulate growth in this ventricle (Flow=Grow, so they would try to stimulate flow in order to grow it)?
3. If it is NOT adequate in size… ?
We won’t know until she comes out, but it looks like the right ventricle may be be too small and will not be able to do its job. That’s the bad news. The good news is that it’s possible to live without the right ventricle (It’s called Hypo-plastic Right Heart Syndrome). She would need 3 open heart surgeries over the next 3 years to re-route the blood in her heart and function properly. The doctors are very positive about her living a normal, functioning life with the exception of playing competitive sports at the high school level.
Frequently Asked Questions:
Q: Will you have to be induced?
A: No; they want her to bake for as long as possible. The delivery should be normal as well (no C-section).
Q: Where will you deliver?
A: The plan is to deliver at UVA Children’s Hospital because that’s where the surgery will be done. We’re working on a way to stay in Charlottesville 2 weeks prior to my due date in an effort to prevent a dramatic 1.5 hour drive to the hospital when my water breaks.
Q: How long is the recovery?
A: If she has open heart surgery, it will be a good month in the NICU. This is the route it’s looking like it will go.
Q: When will you return to Iceland?
A: That all depends on the size of the right ventricle.
Feel free to post any questions. We don’t have a lot of answers apart from what I wrote here, but we’ll give it our best shot.
*For the right ventricle to grow (This would mean no open heart surgery)
*For me to handle the emotional rollercoaster of having imbalanced hormones and an extended stay in the NICU (BAD combo).
*For God to give our whole family strength to handle the extra stress this situation will bring.