Ethan H.

One day, my 3 year old started telling me that I had a baby in my belly. I corrected her, but she was insistent. The next day, I tested, and sure enough, I was pregnant. Then, she started to say there were 2 babies. We assured her, there was only one. At the first ultrasound, we only saw one baby, but as she seemed pretty sure still, the ultrasound tech kept searching. She was about to complete the exam, when I asked if I could record the heartbeat I was seeing on the monitor. She said “oh, that’s just a pulsing vein,” but she measured it just to be sure. Her face went worried/confused/astounded all at once, as she realized she had found the 2nd baby…Ethan.

From that first ultrasound, they kept telling us to prepare for him to die. Something seemed very obviously wrong, as we could see no fluid, just a heartbeat. Week after week, we would go get scans, and week after week Ethan fought and grew. By 18 weeks, we had been diagnosed with Twin-To-Twin Syndrome. We had surgery to separate the babies around 20 weeks, and unfortunately, we lost his identical twin brother a week later. The doctors held very little hope that Ethan would survive, as they believed his twin’s fluid was the only thing keeping him alive.

When my water broke 2 days later, we came in prepared to deliver them. Instead, we saw Ethan was fighting still, and that started our fight with him. Week after week, he grew slowly..until week 27. A cardiologist stopped by my hospital room to check his heart, since we expected to deliver him any day. Ethan was diagnosed with Tetrology of Fallot, which is a rare heart condition resulting in 4 heart defects. As my water had been broke for roughly 7 weeks at this point, we were told once again he could not possibly survive birth. With lots of prayers, we welcomed Ethan at 34 weeks, a “huge” 4lb 5 oz. He amazed his NICU team, even coming home before his open heart. He had his open heart surgery at 4 months old, and they were able to fix 3 out of 4 of the defects. He will likely need another surgery at some point, but we are going “scan to scan.”

After his heart surgery, we knew his head was not growing properly. With a combination of even more genetic testing and scans, he was diagnosed with Faundes-Banka Syndrome and Craniosynostosis.  He had a Cranial Vault Reconstruction surgery at 19 months to fix the Craniosynostosis, and while the recovery was long for him, he is thriving now. He is meeting so many milestones we never dreamt possible. We keep busy addressing some of the issues caused by either his genetic condition or his TTTS, but we are loving watching him enjoy his life so fully!