Elliot’s Story
By Carrie Perry
18 weeks into my pregnancy, BJ and I learned that Elliot had bilateral club feet, meaning both feet were out of position. At the time, my heart ached that he would start his life with that struggle. When I developed pre-eclampsia at 25 weeks and Elliot was born weighing only 1 pound, 9 ounces, concerns over his feet became an almost distant memory. There was nothing easy or simple about Elliot’s entrance into this world, but that’s what made it memorable!

At birth, Elliot was given an 18 percent chance of life. He was born before his lungs and other organs were fully developed and he had his first surgery – to repair a tear in his intestine – when he was five days old. Despite the complexity of the surgery, his will to survive was strong. On day 11, I held Elliot for the first time – it took two nurses and a respiratory therapist to make it happen, and I was only allowed 60 minutes. It would be two more days before my husband would have his turn. At 21-days-old, Elliot’s lungs collapsed, which resulted in an increased need for oxygen, three different ventilators, and a blood transfusion.
Elliot was 23-days-old when he finally received his first taste of milk, starting with 1cc every two hours and gradually increasing to 3ccs over the course of several days. After 6 weeks in the ICN, we added additional human milk fortifier to Elliot’s milk. This was a decision we made as a family with our care team and was not taken lightly. Elliot needed to grow and strengthen his lungs, and adding extra nutrients was the easiest and safest way to help him along. Over the next few months, we watched from his bedside as he fought for his life. We knew and trusted his care team to guide us as we navigated each day.
After 121 days in the hospital, Elliot came home on oxygen, with a feeding tube that delivered preterm post-discharge formula – and those pesky club feet. It has been just over 13 years since Elliot was born and he’s a happy, healthy 8th grader. He still has his feeding tube and his care team monitoring his progress is much smaller. But there is no doubt in our mind that the success story we share today is due in large part to three things: Elliot’s will to survive, our incredible care team, and the incredible advancements that have been made in neonatal care that provide premature babies like Elliot the products and nutrients they need to grow, survive, and thrive!