Tuesday started with the echo. For over an hour and a half, I was on the table while the tech took hundreds, yes hundreds, of images of Baby A’s heart. It is clear that something is wrong, and the tech was an angel, absolutely as sweet as could be.
After that, I walked across the hall to meet the pediatric cardiologist. Everyone always asks, “Will someone be joining you?” “No, it’s just me.” A sure sign you’re about to get bad news, and that most people don’t go through this alone.
Unfortunately, the perinatologist’s diagnosis is correct, and lucky us, not one, but three heart defects.
Transposition of the great arteries (TGA)
Pulmonary Atresia/ Stenosis
Ventricular Septal Defect
The pediatric cardiologist drew pictures and diagrams, as we talked. Fortunately I know a bit more than the average bear about normal heart anatomy, so we were able to move through that portion rather quickly. As usual, causes were discussed. As usual, it comes down to a slightly higher risk of heart defects in IVF babies, twins, and sometimes really bad things just happen.
Moving on to the “what does this mean” portion of our discussion…
He started by saying that this is much more complicated because I’m pregnant with twins. They are very concerned about preterm birth, since I delivered a bit early with Kate, and twins generally come even earlier. The “goal”, in his opinion, is to get me to 35 weeks, anything after that is a big bonus. If I can make it to 35 weeks, they should be able to do open heart surgery within a few days of birth, as scheduled. Otherwise, we’ll have some NICU (neonatal intensive care unit) time before surgery.
The best-case scenario is that they’ll be able to do a newer (about 20 years old) procedure called the Arterial Switch Operation (ASO). He said they “think” this operation will ultimately provide the best quality of life, best long-term outcome for TGA patients. Unfortunately, since we have some other issues, the ASO might not be possible, in which case they’ll do an older procedure (plus end up building an additional structure with a foreign material), known to have more subsequent long term effects, additional open heart operations, and possibly leading to a heart transplant one day.
One of my major concerns is being on pump during surgery, as I know many adults have said they’ve never felt the same after being on the heart lung machine. We discussed the consequences, long term effects (not well studied in children), etc. This is one of the times I really, really wish I hadn’t worked in cardiac surgery. I know what it’s like to be in the OR, what it’s like to see a patient’s sternum cut open, to go on bypass, etc. Very different when it’s your child, your newborn. He completely agreed.
We discussed hospitals and surgeons at great length. The bottom line is that bad things can happen anywhere, and things can go downhill quickly in any OR, which I know. It’s important to me that we have a surgeon with a lot of experience, not someone who sees maybe five TGAs per year. He gave me the names of surgeons at Stanford, Boston Children’s, CHOP in Philadelphia, and a few others. Location wise, a hospital in Minneapolis would be ideal, as it’s only 4+ hours (each way) from where I just leased a townhouse (days before the initial diagnosis). There are three options in Minneapolis (U of M, Children’s and Mayo). The pediatric cardiologist doesn’t think that one is better than the others, though he personally knows the surgeons at U of M and is still on clinical staff there. The fetal echo films were already en route to U of M as we were speaking, though they can be sent anywhere, if we choose to go to a different hospital. They are making arrangements for me to meet the “team” at U of M sooner than later, in case of preterm labor, and in case I don’t think it’s a good fit, we’ll have time to go elsewhere.
Another topic I brought up is delivery. I’ve been told repeatedly that I need to deliver at a major cardiac center, which I completely understand the rationale behind. However, knowing that the baby has a severe VSD (which buys some time), and other circumstances, I asked the cardiologist about delivering locally, as originally planned. He said the “team” wouldn’t like it (which I know), but due to our unique circumstances, he’d push for it, if the VSD is still large, and everything else looks stable. Before the judgment starts, please know that I’ve put a lot of thought into this, and I know the risks. That said, I’m trying to figure out how to divide myself three ways, add in that I have a very sensitive, almost 16 month old, who’s already been through a lot over the past few months. I’d like her to have stability as long as possible, before her world is once again turned upside down. The other factor is that often times, TGA is not diagnosed in utero, so it’s a big surprise after delivery, chaos ensues getting the baby transferred, etc. In my case, everyone will know ahead of time, plans can be in place, and if we do end working with U of M, a medical transport from here to there is not a huge undertaking. Plus, I still have time to think about this and change my mind. He repeatedly said he doesn’t envy us, or the decisions we have to make.
The plan is to repeat the fetal echo between 28-30 weeks. He said he’s always available, if I have any additional questions or need anything. Three hours, well spent!