Little Hearts

Wyatt, born 2009

I was pregnant with my second baby, who we already knew was a boy. At my Level II sonogram at 20 weeks, the technician told us that his aorta looked small against his pulmonary artery and recommended a fetal echo. In a panic, I went to the same Pediatric Cardiologist we tried when I was pregnant with my first son (echogenic foci - normal anatomy). He told us that everything looked good, though he was having trouble getting a clear picture and told us to go enjoy our Caribbean vacation without worry and to come back to him in 2 weeks for a repeat.

I went to that appointment alone, thinking there was nothing to it. After the echo, the doctor sat me in his conference room while a medical student observed. The doctor drew diagrams of the heart to explain the baby's VSD. He said it was large and its location meant that it would be more likely to need surgical attention instead of hoping it would close on its own. He also referred me for an amnio, which came back showing a chromosomal inversion. This took weeks of heart wrenching anxiety to clear - which it thankfully did when we learned that my healthy husband has the same inversion.

I had several fetal echos during the course of my pregnancy, but this little baby always presented with his back to the screen and wouldn't flip no matter what we tried (I liked trying chocolate!). We never got pictures of the front of his anatomy. The prognosis of the VSD got better as he grew, so by the end of my pregnancy, we expected a normal delivery, a quick echo and to have a "wait and see" recommendation regarding treatment.

When I gave birth to Wyatt on March 26th, he was screened by cardiology immediately and placed in the regular nursery. I didn't think much of anything at this point. I knew he'd have an echo before leaving the hospital, which he did on his second day. I remember the same cardiologist telling me to sit down and telling me that Wyatt would need a "little ride in an ambulance" to go to another hospital to have a "little operation." Wyatt had a Coarctation of the Aorta along with the VSD.

Within minutes, he was in the NICU and they were hydrating his umbilicus. We weren't able to see him for hours, and when we did, it was shocking. He had been in a regular bassinet and was now in a NICU transport pod with countless sensors, lines and wires. He was so tiny. We put him on the ambulance and I left the hospital without my baby.

These 2 weeks were the hardest days of our lives. The hospital was 45 minutes away without traffic, but New York always has traffic. I had to pump every 2 hours to have any shot at being able to nurse this baby. We had a 2 1/2 year old at home who would only nap with me and needed a lot of attention. Wyatt would be on a nutritive IV until surgery and "acted hungry" every day (wound up being 6 days of this). I don't know how we got through it, but we did.

Dr. Q decided to address both the VSD and the COA in the same surgery, thankfully. Wyatt's correction was done when he was 7 days old. He was transferred back to our birthing hospital on Long Island at 12 days and finally came home at 16.

Wyatt today is thriving. He has a Bicuspid Aortic Valve and his Mitral Valve is small, so we're monitoring that hoping it doesn't develop into stenosis. He's 100% breastfed and in the 50th percentile for weight. He babbles, crawls with agility, freestands for minutes at a time (even while bouncing!) and is very close to walking. He adores his big brother.

I still think about these experiences every day and have a hard time emotionally when I remember what we all went through. I feel guilty for that, knowing that he is fine and healthy. We might not have been this lucky and that scares me.

Story by Wyatt's mom, Amanda - NEW YORK

8/29/2014
Stephen, born 2001
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Louie, born 2009
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