Emmett's Congenital Heart Defect Journey

Hello. This fundraiser is for my daughter and son-in-law, Addie & Nolan Young, and my sweet grandson, Emmett.

Addie & Nolan welcomed their twins in January. Emmett was born with a congenital heart defect that has landed him in the hospital three times already in his short three weeks of life. The following is a summary, written by my daughter, of what they have been dealing with:

Nolan and I were excited when we found out we were pregnant for the first time in May 2024. To our surprise, we found out that we were expecting TWINS come January 2025. We were excited and nervous, but our world changed when we had our 20 week anatomy scan of the twins. Our baby girl, Emersyn, looked like a perfectly healthy baby, but we could no longer say the same for our sweet baby boy. Our anatomy scan took upward of 4 hours because we had 4 different ultrasound techs come in because they told us they were just "having trouble" getting all the needed pictures. What we didn't know was that they were actually doing a more in depth scan of Emmett's heart because they weren't seeing any blood flow between his right atria and his right ventricle. A doctor finally came in soon after to tell us that the ultrasound suggests our baby boy has a severe congenital heart defect called tricuspid atresia. We would learn a lot more about his overall diagnosis down the road, but to say we were devastated would be an understatement. The doctor quickly began the referral process for Stead Family Children's Hospital in Iowa City. We live about 2 hours away from Iowa City in Waukee.

For the rest of my pregnancy, we were constantly traveling back and forth to Iowa City for appointments. I was already considered high risk due to the twin pregnancy, but now I required even more appointments and monitoring due to Emmett's heart condition.

Iowa City explained to us that Emmett has Hypo-plastic Right Heart Syndrome associated with tricuspid and pulmonary atresia. Basically, he does not have a functioning right ventricle which is supposed to pump unoxgenated blood to the lungs to become oxygenated before getting pumped out to the rest of his body. There is no cure for this diagnosis. All we can do is implement "fixes" in his heart to ensure that blood is still able to reach his lungs. This condition is treated with a typical 3 step approach. He will need at least 3 surgeries during his first 1-3 years of life. The first is a cardiac catheterization which happened immediately after he was born, and the other two will be open heart surgeries. The first open heart surgery will happen when Emmett is between 4-6 months old, and the third open heart surgery will happen when he is between 1-3 years old.

Iowa City began to prepare us for what life would look like for Emmett following his birth. We were told that he would be immediately taken to the Cardiac PICU to be started on medications he would need until he was taken to the cath lab to have his first procedure.

On January 17th, 2025, the twins were delivered safely in Iowa City. We spent 15 days in the PICU with Emmett while also adjusting to life with his twin sister Emersyn. On January 24th, Emmett was taken to the cath lab for his first procedure. He was a rockstar and recovered very well. We were so excited to be able to finally go home with the twins on February 1st. Unfortunately, since we have been home, Emmett has had several instances of very low oxygen saturations, and he has been transported from Waukee via ambulance and admitted to the Cardiac PICU twice already. We are currently admitted and working with his care team in Iowa City to get some answers as to why Emmett has continued to require increased respiratory support. Emmett will likely require another cardiac catheterization to get some much needed answers.

During this time, I am unable to work and have no idea when, or if, I will be able to return. Both Nolan and I had only recently started our new jobs in the Des Moines area, so neither of us have much paid time off to rely on. Nolan is taking extra time off during this time as well, and he has already used all of his available sick time and is close to exhausting the remaining vacation hours he has available to him. After he runs out, he will be taking unpaid time off. While this is a difficult time, we plan to be next to Emmett's side for as long as he needs to be able to get the care and support he needs to live a long, beautiful life.

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This page was organized to help off set all the expenses Addie and Nolan are dealing with during this time including gas, lodging, food, medical bills, and home expenses such as their mortgage, utilities, etc while they are both unable to work. We ask that you send your thoughts and prayers during this very scary and challenging time. Thank you for taking the time to read through Emmett's story. He is our little heart warrior. #EmmettStrong