As I said in my last post, I would need to put all of my thoughts into words. Please don’t be upset if you are reading it here first. We decided to tell very few people because it is extremely hard to talk about and a lot to take in (for all of us). Plus, we didn’t want everyone to be worrying as much as much as we have. Please remember that the baby isn’t even here yet so nothing is set in stone. Well, here it goes from the beginning...
At our 5 month ultrasound, we not only found out that we were having a boy, but also informed that I most likely had a Single Umbilical Artery (SUA). This happens in approximately 1 in 100 live births. It is not necessarily associated with anything wrong or any disorder, but it can mean that there are other problems with the baby (which broadly varies so don’t google it). We also did the genetic testing (blood test only) at this time which was found to be negative for the chromosomal disorders. The SUA was confirmed during an ultrasound at 6 months. This confirmation mostly meant that the baby would be monitored for growth especially during the last weeks before full-term status.
We were sent to a high risk fetal specialist at USA Women’s and Children’s Hospital due to the SUA and other concerns noticed on the ultrasound at 6 months. The fetal specialist confirmed a hole in the heart and that determined that the potential heart problems were enough to also send us to a pediatric cardiologist.
The pediatric cardiologist performed a fetal echocardiogram and confirmed the Tetralogy of Fallot [pronounced fah-LO] (TOF) diagnosis. This happens in approximately 1 in 10,000 live births. Basically, this means that the baby has a hole between the left and right ventricles of the heart (VSD - Ventricular Septal Defect), an overriding aorta (misplaced location), and pulmonary stenosis (valve is partially blocked).
Surgery needs to be performed within the first year. The pediatric cardiologist decided that we needed to visit UAB for further consultation as Mobile does not have a pediatric cardiovascular surgeon, therefore, all surgeries (whether immediate or in the future) would be performed in Birmingham.
On April 11th, we travelled to UAB for an appointment with the fetal specialist and pediatric cardiovascular surgeon. A detailed ultrasound, a fetal echocardiogram, and a team of specialists later, we had a conference where lots of things were discussed. Most importantly, the baby needs to be delivered at UAB. And if you didn’t know…Birmingham is approximately 260 miles away and 4+ hours of straight driving.
So what does this all mean? Well, at this point (as all things are subject to change), we expect to deliver at UAB at 39 weeks (to avoid underdeveloped lungs on top of a heart condition). The doctors want us to be close to the hospital at least 1 week beforehand just in case. I will be closely monitored in Mobile and may need to travel to Birmingham sooner if needed. After birth, they expect “Bobby” will need surgery within 1-2 weeks (they would like him to be eating, pooping, and sleeping like a normal newborn to ensure that it isn’t a problem beforehand). And then he will continue to stay in the hospital for approximately 2 weeks after surgery (for healing purposes, but to also ensure that he is back to eating, pooping, and sleeping regularly). At that time, we hope to go home…As we don’t know what to expect, travelling that distance in a car with essentially a newborn that just had heart surgery might be a little nerve-racking. Of course, he will be closely monitored locally by his pediatrician and pediatric cardiologist.
At 6 to 9 months old, “Bobby” will need to have open heart surgery. This surgery will actually attempt to repair the defects in his heart. As this is months to a year away from now, plus he hasn’t even been born, we don’t know much about what will actually occur and when.
I hope this blog provides my family and friends with the information that they want to know. We have decided not to tell many people about the medical issues we are currently dealing with because its just draining to think about much less tell the story from the beginning over and over. I will keep you updated through this blog so please keep checking back.
As you can imagine, I have been searching for others with similar circumstances. Beyond a few online boards and a few abandoned blogs, I just haven’t found much yet. So if you are looking for someone like us, please email me!
No comments:
Post a Comment