Hope in the Waiting — Small Hero, Big Hope

Written by Jenna

Lainey Harmon of Bondurant, IA (a twin), was diagnosed with a heart defect at 20 weeks utero and was going to need a PDA stent placed shortly after birth. 

Lainey was born in Des Moines, Iowa, on January 25, 2025, at 32 weeks’ gestation, weighing 2 pounds 18 ounces. She was intubated right away and placed on prostaglandin to keep her PDA open for better blood flow. Lainey spent 1 month in Des Moines, and after her breathing tube was removed for a few days, her stats dropped, and she was life-flighted to Iowa City.

When we arrived in Iowa City, Lainey quit breathing and was intubated again. They ran tests, did echos, and came up with a bigger diagnosis than we had previously been given. The new diagnosis was tricuspid stenosis and pulmonary atresia.

We spent 2 months working on feeds and getting her up to a weight (2.5 kilos) where she could have her stent placed. On April 18, Lainey’s stent was placed, stats improved, and a few days later, the breathing tube was removed!

Lainey went in on April 25 for another catheter procedure to clear the IVC, as they would need access for future catheter procedures.

In May, Lainey got her G-tube placed for feeding, and after months of traveling back and forth from Iowa City to be with Lainey and home to be with our other two girls, Lainey finally came home in June after 131 days.

In August, Lainey had a cath procedure to balloon her stent to improve her stats. In October, the surgeons wanted to take a few more pictures of her heart and see how to approach her next steps. We met with the doctors, and they told us that the Glenn surgery was risky and that it may not work for Lainey long term. We were told a heart transplant would be the best option for her. As of November, Lainey is officially on the transplant list, and we are waiting. 

Lainey was an IVF baby. We had transferred one embryo and ended up with two! Having one twin with a heart defect and the other twin being healthy has been hard. Seeing them at different stages can sometimes be difficult/sad, but Lainey is a happy, almost 1-year-old, learning new things, and she is thriving. Our life is a little bit busier with more meds, more monitoring, more worry, and of course, 3 girls under 5, but this is us, and this is our story. 

We are so thankful for all the support that has helped us. We have taken months off work, traveled many miles to be there for all our girls, and the support we have received has made it possible for us to do that. We have met new heart families, and we’re so glad we have other people to connect with and talk to.