Checking In — 11/5 HROB and PC Appointments

Our appointment with the high risk obstetrician (HROB) was initially scheduled for tomorrow, but after deciding that we would look into a second opinion from Boston Children’s Hospital later this week, we moved the HROB appointment up to today so that it was on the same day as our appointment with the pediatric cardiologist (PC). After all was said and done, we spent around four and a half hours with our doctors today. There was a lot of information to process, needless to say.

Teddy remains a giant pain in the you guessed it during his scans. He’s incredibly “active”, the doctors have said. We say hopefully this isn’t a preview of what he’s like as a baby. But from the images the HROB and PC were able to obtain, we were given some relatively good news.

First, the HROB told us that there wasn’t anything alarming about Teddy’s brain, kidneys or anatomy other than his heart. This was reassuring to hear since there were signs at our last HROB appointment that there may be issues with a part of Teddy’s brain and his kidneys. Although there is still a chance that abnormalities develop over time, at least for now we are in the clear.

Second, the PC gave us some reassuring news about the condition of Teddy’s heart. Since there’s a lot here, it’s easier to lay it out in a list. Full disclosure, I am a lawyer and not a doctor. Some of this may be completely wrong, but it is the best I can recall, Your Honor:

  • Ventricular inversion and large ventricular septum defect. We were unsure if Teddy’s heart was missing a second ventricle entirely or if the second ventricle was just too small to see without an echocardiogram. After the echocardiogram today, it turns out that Teddy has both a right and a left ventricle but that they are inverted and not separated by a ventricular septum. We learned that this means his right ventricle is actually on the left side of his heart, and his left ventricle is on the right side of his heart. Since the two ventricles are not separated by a wall (the ventricular septum), his heart is essentially functioning like a heart with a single ventricle. Although Teddy’s heart still technically has a single ventricle defect, the outcome tends to be more positive when a child has two ventricles that are connected than when a child is missing a ventricle entirely.
  • Moderately hypoplastic right ventricle. The right ventricle, located on the left side of Teddy’s heart, is moderately hypoplastic. This means it is moderately underdeveloped. That it is underdeveloped is not ideal, but that the underdevelopment is only moderate is a relatively positive finding.
  • Pulmonary atresia. The valve that is responsible for allowing blood to flow out of Teddy’s heart and into his lungs has not formed properly. According to the Mayo Clinic, “Instead of opening and closing to allow blood to travel from the heart to the lungs, a solid sheet of tissue forms. So blood can’t travel by its normal route to pick up oxygen from the lungs. Instead, some blood travels to the lungs through other natural passages within the heart and its arteries.” In Teddy’s case, blood is traveling through his ductus arteriosis to the pulmonary artery and then to his lungs. This is OK while in utero, but the first of Teddy’s post-birth surgeries would be to use intravenous medication and a Blalock-Taussig shunt to keep the ductus arteriosis from closing.
  • Healthy aortic arch. In some cases of single ventricle defect, the main blood vessel that transports blood from the heart to the rest of the body (the aorta) is underdeveloped where it bends (the aortic arch). In Teddy’s case, the aortic arch has fully developed and appears to be functioning properly. This is important because the first post-birth surgery for babies with single ventricle defect typically includes an aortic arch reconstruction, which would not be necessary for Teddy. That also makes the prognosis a bit more favorable.
  • Left outlet transposition. The two blood vessels that carry blood away from the heart — the pulmonary artery and the aorta — are both connected to Teddy’s right ventricle on the left side of his heart. I’m not sure what that means, but apparently it’s weird.

While we were able to learn more about Teddy’s heart today, the structure of his heart does not fall into one of the “standard” types of single ventricle defects. This means that there isn’t a standard treatment protocol, but we are optimistic that with our doctors we will put the proper treatment plan in place. Until we learn more, we plan to get a second opinion in Boston and go from there. Fingers, toes and ventricles are crossed…

2 thoughts on “Checking In — 11/5 HROB and PC Appointments

  1. Wendy Woodhouse's avatar Wendy Woodhouse

    Brian and Meaghan, thank u for sharing the updated info. on Teddy! With all the new medical knowledge now, it seems more reassuring that sweet lttle Teddy will ‘fight’ through all this and be a happy, active child! Our prayers are with all if u! Love, Wendy and Larry

    Liked by 1 person

  2. Deborah Lindemer's avatar Deborah Lindemer

    Dear Brian, Meaghan and Teddy

    What a team! You three are amazing, and we are so grateful that you are sharing your journey with us.

    Please know that you have a warm and loving place to stay in Stowe, VT during your travels to Boston.

    We are crossing, praying and channeling positive vibes….hope you can feel them!

    Love you all
    Deb and Geoff

    Liked by 1 person

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