This is Luke’s story written by his sweet momma, Jessica. Thank you Sems family for sharing your story with us!

Starting with our 18 week ultrasound, we kept being told they just couldn’t see everything the way they wanted to with Luke’s heart. We were told not to worry, he was just turned the wrong way, or it was harder to see because of my size. My OB said the ultrasound tech thought the axis of Luke’s heart was off a little, but she looked and she didn’t think so.  After 3 more ultrasounds, and they still couldn’t see the right ventricular outflow tract, we were sent to Vanderbilt.  Again, the OB specialist I was seeing for hypertension, said she did not suspect anything was wrong, but anytime after 3 ultrasounds where everything wasn’t seen, the standard was to see Vanderbilt specialists. I tried not to worry, and I prayed daily for my baby.  I had peace all was ok, and I remember walking in the front door of the children’s hospital and thinking to myself I hoped that would be the last time I ever had to enter that place, a place that now feels like a second home.

I had the scan, and could see the tech labeling various parts of Luke’s heart.  She said I would see the doctor soon, and they were able to gets lots of information for the doctor.  We sat waiting for Dr. Newton, nervous, but calm. Then he came in and introduced himself, and said we needed to make a plan, and asked if I knew what Tetralogy of Fallot was. Immediately, I started crying because I did know. I’m a physician assistant, and we learned about it in school. It was one of those terrible things I’d probably never see, and  could just file that information in the back of my brain. Now, this doctor is telling me my baby has it. Of course being upset, I couldn’t remember anything I knew, so he started explaining  it to me, and slowly it all came back. I was so upset my 2 year old starting crying, so my  husband took him downstairs to play. I gathered myself together, asked all the questions I could think of, and was set up to see Dr. Kavenaugh, who quite literally wrote the book on TOF. I left feeling ok, thankful Luke’s heart problem could be fixed, and with the realization my prayers were answered, just differently than I had thought.

We met with Dr. Kavenaugh, and she was wonderful. I was scheduled to see her again closer to delivery and would meet the doctor who would deliver Luke at Vanderbilt at around 36 weeks. Of course, Luke being the little overachiever he is, we didn’t make it to those appointments.  My water broke at 35 weeks at home over 2 hours from Vanderbilt. We made it there, his delivery was fine, and he was perfect, in my eyes anyway.  Almost 2 days later, he had his first open heart surgery, and we were home 13 days later. We were home a week to the day before being flown by helicopter back to Vandy with a pericardial effusion. For the next four months, we were in and out (mostly in) the hospital with various complications, low oxygen levels, and necrotizing enterocolitis. Finally, Luke had his full repair at 3 mos old, and did well for yes, another week, until he had a bowel obstruction from the previous NEC. So, after a bowel resection that I think was worse than the open heart surgeries, we were finally home for a while.

Two months later, we learned Luke’s pulmonary arteries were scaring down, and he had first a balloon cath, then a stent placement to buy us time before another open heart surgery to replace the donor valve he had and reconstruct his pulmonary arteries. I remember Dr. Kavenaugh walking in after the stent placement and telling me she thought the stent would be good and give us some time. I asked how much, a few years? I felt my heart hit the floor when she told me, no, maybe until his first birthday. And, as usual, she was right. At 13 mos old, he had his 3rd open heart surgery, and since then has done wonderfully. We pray he won’t need another intervention for 5 to 10 years, and after his next check up if all is good, we go to yearly visits.

Through all of this, we have grown closer as a family, and more importantly closer to the Lord Jesus. He has been faithful and taken care of our baby boy.

Thanks to continued research, there is now well-practiced surgical plan for children born with Tetralogy of Fallot. Though every child’s heart is different, the surgical plan can be tweaked and tailored to be successful for most children. However, more research is needed to learn how to care for these children as they grow. There is real and tangible opportunity for these children to be the first generation of “heart babies” to grow up healthy and outlive their parents. You can help make it possible by supporting CHD research: https://projectheart.org/donate