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!

Update November, 2025:

This year has brought new challenges with his oxygen levels dropping periodically while he sleeps. His initial sleep study showed Sleep Apnea and Hypoventilation, but doctors are still working to pinpoint the exact cause. The current theory is that his brain occasionally “forgets” to breathe, though further testing is needed to confirm this.

As part of his genetic condition, he was also diagnosed with level 2 Autism. He currently receives 20 weeks of ABA Therapy each week, along with Occupational and Physical Therapy once a week.

Recently, he’s also faced a month-long struggle with low oxygen and a persistent deep cough. His specialist diagnosed him with Reactive Lung Disease, though a more specific diagnosis may come as he grows older. For now, we manage his condition with daily breathing treatments and do our best to keep him healthy and germ-free.

Despite all these challenges—many linked to his genetic condition or TTTS—we’re forever grateful to watch him living life to the fullest and embracing every moment with joy.

Chasin A Dream helped us bring home a sweet rescue puppy from Furry Friends in July of this year. Alpha Dog Training has been working with Leo (and our family) to train him into a service dog for Ethan. Even though he is still in training, the benefit to Ethan has already been substantial! These two had an immediate connection, which has only grown stronger. Leo has already helped calm Ethan, pushed Ethan to be more independent, including sleeping on his own bed next to the dog, and even has seemingly tried to alert us when Ethan’s oxygen had dropped low. He is currently being trained to alert us when his oxygen or blood sugar drop, and will be trained to help with Ethan's eloping (leaving a safe place). We are so excited to see their relationship strengthen as Leo learns more tasks to benefit Ethan, and we are so grateful for everyone involved in making this happen!