Today we went to Detroit for Jellybean's second fetal echocardiogram. Three things tipped us off that it was going to be a rough visit. First, the doctor came in after the ultrasound tech to take more pictures, and she took a while. Second, as she finished up, she said, "I have lots of questions." Third, she entered the consult room carrying a brochure titled "If Your Child Has a Congenital Heart Defect." She started the consultation by indicating, again, that she had more questions than answers, in part because of things she couldn't see, and she apologized because she couldn't give us a firm answer as to what "official condition" Jellybean has. She did indicate that she believes Jellybean has "a significant heart issue," and provided more detail and a somewhat smaller range of things to consider.
So, what we know:
1) Jellybean has a large VSD. Even if what they discover in the future is all fine, he will need surgery at some point. So, there is no non-surgical option in all of this, just a question of what, when, and how many, really.
2) Jellybean has a large right ventricle and a small, narrow left ventricle. The ventricle "goes all the way down" which means that it is likely usable once the VSD is repaired and also rules out hypoplastic left heart syndrome. (Note--my last post may have indicated the right ventricle was smaller than the left. That was a mis-remembering on our part. It was the left)
3) There were three structures she could not see: the ductal arch, the branch pulmonary artery, and the second outflow. At this point, she can't say with certainty whether she simply cannot see them, or if any of them don't exist. So, we're headed back somewhere around 30-31 weeks gestation in the hopes that a bigger baby will provide a better view. However, as with all things ultrasound, baby's position and cooperation are key and it's possible they still won't know anything for certain. She said that if she still couldn't see something at that point, they would likely err on the side of assuming it wasn't present.
4) There are two main diagnoses we are looking at depending on what, if anything, is missing: Truncus Arteriosus (rare)--where there is only 1 great vessel; and Double Outlet Right Ventricle (very rare)--where two great arteries both come off the right ventricle. Both of these conditions would require surgery, but only one (I think the first, but I'm not certain) would require Jellybean to be in the NICU and have surgery before ever going home. Thus, one diagnosis would require a Detroit OB and delivery and the other would likely permit local delivery and a later trip to Detroit for surgery. Either of these conditions could be fixed with a single surgery, or could take multiple surgeries and still require a transplant down the road. It will all be dependent on what the specific facts are for Jellybean. If it turns out nothing is missing, see point 1.
On the plus side, the cardiologist was super nice. She indicated that all of the other pediatric cardiologists were currently looking at the images of Jellybean so that whichever one of them saw us again would be familiar with him. She also thought we were doing a very nice job keeping it together and thanked us for not screaming and yelling at her. We talked about the fact that my OB's office kept talking about doing genetic testing and amniocentesis and how, because Jellybean was an IVF baby, we thought any risk of miscarriage was too big a risk. She agreed and asked why they were pushing. I indicated that the OB's office told me that the surgeons would want a full genetic test done before surgery. She admitted that they would, but said, "We'll take a few cells after he's born. You protect that baby. If you're not going to do anything differently because of the results, there's no reason to have it done." That was the point at which we both got a little weepy. She also told us we asked really good questions, so that made us feel better.
We are both still processing all of this information. Some moments are overwhelming. Other moments I feel fine, which makes me think I'm just in denial. But some of it still feels like familiar territory, and I know that coping with Lil' Bit's heart issues really has paved the way for me to handle this better than I would have otherwise. Still, it's frustrating that the only thing we know for sure is that Jellybean has some type of heart issue that, at some point or another, will need surgery. Oh, and we know we'll get at least two more trips to Detroit. I'm just glad we opted to take a peek in the first place.
