another appointment, another diagnosis

No, unfortunately I’m not joking.

On Tuesday I saw my regular perinatologist. The detailed u/s showed some growth discordance.

On Wednesday I drove to the University of Minnesota. After another detailed u/s, the new perinatologist and I had a nice chat. He’s a Washington native, too, and very nice. He said he agreed with the original diagnosis, but “we’ll let the cardiologist confirm it.” We discussed delivery and while he wasn’t thrilled with the idea of me delivering locally then transferring the baby, he said, “We’ll keep our options open.”

Then it was off to pediatric cardiology for another fetal echo; this time, on both babies. The new pediatric cardiologist came in to look at the pictures, then we went to talk.

There is a FOURTH diagnosis. Double Outlet Right Ventricle (DORV). So, now we’re dealing with DOVR, TGA, VSD and PS. Devastating news. The newer Arterial Switch Operation is completely off the table, not even an option. The course of action now is an injection of Prostoglandins immediately after birth. Within a week, placement of a BT Shunt (3 weeks in the hospital.) She said these kids have major issues with suck, swallow breathe and reflux, so he needs to demonstrate that he can gain weight and hydrate. He’ll be followed closely by cardiology and at some point, have the Rastelli procedure (she said likely between 5-8 months). They’ll build a Gore-tex conduit in the heart, which of course brings another set of issues, introducing a foreign material, which the body fights, plus the conduit has to be replaced as he grows and with buildup. Estimated hospitalization time for this is 4 weeks.

I asked about causes and she said nobody knows. I told her that I’d heard there’s a higher incidence in IVF babies and twins. She said that was true. I also told her that I’d read things online such as poor maternal nutrition, alcohol use during pregnancy, diabetic mother, etc. She said none of that is true and that I certainly wouldn’t find it in medical/ cardiology literature. As for how common something like this is, she said, “About 10 cases a year.” DORV is very rare.

The cardiologist wants additional chromosome testing, ultrasounds of the head and kidneys, and a few other things, right after birth. She also said the lungs can be compromised, so throughout life, the slightest runny nose means a trip to the pediatrician, concerns about RSV, etc. Six and a half hours later, I left. Then drove the four hours back, in the first snow of the year. Don’t I have all the luck?

Yesterday I was a confused mess. I called the original pediatric cardiologist and he met with me within hours. The discussion was very informative, and he clarified the need for additional chromosome testing (which hadn’t made any sense to me since the amnio was normal.) Apparently there are some cardiac lesions that are associated with chromosome issues that aren’t included in the amnio. He named one in particular, which sent me marching upstairs to my perinatologist’s office (they’re in the same hospital.)

My perinatologist’s nurse showed me the test results, negative. She also said my doctor was in, if I wanted to see him. I waited for him to finish seeing patients, then he and I sat down for another long, very helpful discussion.

This morning I left a message for my high risk OB’s nurse, and had asked that she call me. My doctor called instead; she’d just read the reports from the U. We had another long talk. She also informed me that she’d spoken with the neonatologist and he said that if I wanted to deliver there, he was okay with it. One of her partners brought up the issue of transferring the baby to Minneapolis, in February, the concern being weather/ blizzard related. Of course with the new diagnosis, my doctor doesn’t think anyone will be comfortable with delivering locally :(

So, where does this leave us? Well, obviously in the hands of some fantastic doctors. My high risk OB, original perinatologist and original pediatric cardiologist have to be some of the most caring, compassionate providers I’ve ever met. Ever. Of course we are devastated, beyond words, devastated. For now I’m scheduling appointments with other providers, researching like mad, and making a quick out of state trip for additional opinions.

Baby A is a very sick little boy, and we could use all the good thoughts and prayers you have.