This past Friday afternoon Matt and I met with a fetal cardiologist at Texas Children's to confirm Quinn's diagnosis and hear about her prognosis and treatment. It was such a long day and included a 2 hour ultrasound, but we left knowing a little bit more about what we are all up against.
Her diagnosis has changed from Tetralogy of Fallot to "Double Outlet Right Ventricle with Pulmonary Stenosis". I think there's actually another word attached to that last diagnosis but at the moment, that's all I can recall. It's not really good news or bad news that the diagnosis has changed. They are sort of in the same family and treatment is somewhat the same. The best news was that our new diagnosis is not usually associated at all with genetic or chromsomal disorders like Down's - so we really don't have to worry about that now which is a massive relief to me.
This is just a defect that happens. No reason, no cause, no explanation. It just happens. It's also very rare -- while TOF makes up about 15% of all congenital heart defects, DORV accounts for less than 1%.
The good news is that Texas Children's is rated #3 in the entire country for pediatric cardiology so we literally couldn't be in a better place. The doctor who met with us on Friday was absolutely amazing. I've met with a lot of doctors over the years and I have never had anyone that showed so much compassion and wisdom -- and spent over 3 hours just with us. She wasn't in a hurry and took her time during the ultrasound to make sure they accurately identified Quinn's problems. It was a huge blessing and relief to us to know that she will be in such good and capable hands.
Once they completed the ultrasound, she outlined and reviewed everything with us. When we walked back to her office, she warned us that it was going to be a lot like Biology 101 and that's when I knew I was in trouble. Science was never my strong point - and anatomy especially was not. And I don't know about you, but my Biology class never had anything about "pulmonary stenosis with arterial defect". As I am reading more about this defect though, these words are becoming more and more second nature and I'm sure that will only continue.
Anyway, bottom line is this...we don't know exactly what we are facing in terms of her treatment. As specific as they can get on the ultrasound (which is absolutely amazing to me that they can drill down to arteries in a 1.5lb fetus!!), the unknown is how she is actually going to be when she is born. Every child with this defect is different. Some do well after birth and some need surgical assistance almost immediately following.
Potentially, Quinn could need to have surgery at 1 day old to put in a shunt to open up the pulmonary artery. Or she may just be watched closely in the NICU and if she does well, head home with us almost on a normal time frame. What is known though - she will have to have major open heart surgery when she is just a few months old to correct all of the defects (there are 3 or 4 that make up this one defect). And because of the type of repair that they do, most likely she will face at least one more surgery at elementary school age to replace some of the parts they use. The doctor promised us that Texas Children's will become our home away from home.
The main thing right now is that we give Quinn the biggest chance to survive her condition --- and that means keeping her in utero for as long as possible. We need to get her to full term and a healthy weight. Premature is never good but in her case, it could be devestating. The scary thing is that obviously with twins and a relatively small mom, it's going to be hard to get them to the 38 weeks. All I can do is keep resting as much as possible and eating lots of good food to fatten up the kiddos. The rest is in God's hands.
And that pretty much goes to everything. All of this is just about 100% out of our control. God is in control of this one. And thank goodness. Because I think he understands Biology 101 much better than I do.
In His Hands,