02/02/2026
Today marks the first day of Heart Month, and I want to start by resharing Emmett’s story.
For the first 28 weeks, our pregnancy was a dream. It was easy, joyful, and full of excitement. We were so happy to be welcoming two boys so close in age, even though it was a surprise. I even had an IUD. Life felt simple and beautiful.
Then, in the span of just three days, everything changed.
We saw two different specialists in two different cities and states, and we learned that Emmett was extremely sick. He had severe hydrops and severe Ebstein’s anomaly with a circular shunt. His body was retaining so much fluid that doctors were unsure if he would survive to our next appointment.
We were given three options. We could terminate the pregnancy at 28 weeks. We could go home and continue the pregnancy without intervention and allow Emmett to pass. Or we could try a medication called Indomethacin to reduce the fluid around his body and heart.
We chose to try the medication to give Emmett the best possible chance.
We were told that if he made it to delivery, he would need emergent surgery and would have a long road ahead. His surgical plan included 3 open heart surgeries. The Starnes, the Glenn, and the Fontan.
After two weeks on the medication, the fluid on Emmett’s body had improved. However, the amniotic fluid had reduced too much, so we had to stop the medication and move forward with weekly ultrasounds and echocardiograms.
Emmett made it to 38 weeks gestation before we went into labor. We were not able to make it to St. Louis Children’s Hospital in time to deliver so he would need transported immediately. Emmett was born unresponsive and not breathing, but the neonatal transport team acted quickly. They got him breathing, intubated, sedated, and immediately flew him to Children’s Hospital, where he would spend the next ten months.
Once testing was complete, we learned Emmett had an EPHB4 gene mutation, Abernethy malformation, and severe Ebstein’s anomaly with pulmonary atresia. Due to the loss of amniotic fluid, he also had hip dysplasia.
Emmett’s heart was so enlarged that after four failed extubation attempts, doctors determined his heart was compressing his airway. He physically could not breathe on his own.
At just five weeks old, Emmett underwent his Starnes procedure and BTT shunt. He was gone for over sixteen hours before we were finally able to see him.
After that, he thrived.
He transitioned from NJ feeds to NG feeds. He was extubated and weaned all the way to room air. He even weaned off of all IV sedation. Over time, Emmett made incredible progress. He never went home, but we were given a small taste of a normal life. Our boys played together in his hospital room. We even got to take him outside once. We practiced NG tube changes and medication schedules. He grew stronger every day.
Then it was time for his Glenn procedure.
A pre-Glenn catheterization showed a few collaterals, which were coiled. On April 1, 2024, Emmett underwent his second open heart surgery. The surgery went well, and initially, his recovery was smooth.
The following evening, his oxygen levels began dropping rapidly, even while intubated. They fell below 60, then below 50. It took repositioning and multiple medications to stabilize him. That was the first sign something was wrong.
In the weeks that followed, every time Emmett made progress, he would take several steps backward. Two weeks after his Glenn, he just could not wean down on ventilation support and finally another catheterization revealed high Glenn pressures and additional collateral vessels that were stealing oxygenated blood. They were coiled, and we continued working toward extubation.
Despite every effort, Emmett continued to struggle. Even while intubated, he had difficulty breathing. Severe swelling developed, and positive pressure ventilation is extremely hard on a post-Glenn heart. Respiratory therapists searched the entire hospital for a mask that would properly fit his face. Everyone tried everything, but no one could fully explain why he was declining.
After nearly nine months we began publicly sharing Emmett’s journey. We contacted state representatives, spent countless hours on the phone with insurance, and sent second opinions to nearly every major children’s hospital in the United States.
UPMC in Pittsburgh believed they could help. However, after weeks of delays with insurance and another catheterization, Emmett declined. UPMC ultimately determined they could no longer offer treatment.
After nearly ten hospitals, Texas Children’s Hospital believed they could help. They believed that at the very least, they could attempt to evaluate Emmett for transplant.
On August 10, 2024, Emmett was transported to Texas. He felt the warm sun on his face as he boarded the plane with his dad. For us it felt like a new beginning for our baby.
At Texas Children’s Hospital, Emmett underwent a seven hour catheterization. His collateral burden was extreme, but they coiled as many as possible. When it came time for the second catheterization, we were called into the conference room after only one hour. In our hearts we knew something was seriously wrong.
The collaterals that had just been coiled in the first Cath in Texas had already reopened. There were countless others on the opposite side that could not be coiled. After more digging the team in Texas revealed Emmett’s genetic condition caused arteriovenous malformations which are abnormal veins or arteries. This was the reason for his severe collateral burden. This ultimately meant he would never qualify for a heart transplant.
At that point, there were no remaining medical options. We were given the chance to simply be his parents and hold him close.
On September 1, 2024, Emmett passed away peacefully in his dad’s arms.
Emmett showed us what true strength looks like. Every day, he fought with everything he had. He taught us more than we ever thought possible, and his impact on our lives will never fade.
He spent every single day being braver than anyone I have ever known. He fought harder than most adults ever will. He taught us more than a lifetime could hold. He made the world brighter simply by being in it.
I would give anything for one more second. One more moment to hold him, kiss him, and tell him how proud we are to be his parents.
This Heart Month, I encourage everyone to wear red, share your heart journey or your child’s story, and help spread awareness for congenital heart disease.
For Emmett. For all heart warriors.❤️💙
