Cincinnati Children's Heart Institute

11/25/2025

"When I was pregnant with Hank, he was diagnosed with d-TGA, meaning his aorta and pulmonary artery were transposed. Then, when he was born, he was immediately intubated and had an atrial septostomy. At just 6 days old, he underwent open heart surgery - an arterial switch.

He was discharged at 17 days old, stable and recovering well from surgery. A little over a month later, during a follow-up echo, he was found to have pulmonary hypertension. He was admitted immediately, and he underwent an urgent cardiac cath to confirm the pulmonary hypertension and coil collateral vessels. Unfortunately, he failed extubation from that procedure and remained hospitalized for the next month as he received treatment for his newly diagnosed pulmonary hypertension. A few months later, he had another heart defect, an aortic coarctation, repaired in his second heart surgery.

For the next two and a half years, Hank’s PH continued to progress despite additional therapies. At that point, due to the poor prognosis for TGA kids who develop PH, his PH doctor at Joe D recommended we start finding an accredited comprehensive program for Hank’s care to be managed. We visited and spoke with a few different pulmonary hypertension centers across the country.

We knew the second we met the team at Cincinnati Children's Heart Institute that these were the people we would trust with Hank’s care moving forward. We lovingly call them “the Avengers” when explaining to friends and family how reassured we were in our decision to move across the country for them.

Hank has now been under the PH team’s care for a little over five months. In that time, he has started on subq remodulin and most recently, after the team’s relentless efforts and appeals, finally received insurance approval for Winrevair - the newest, most promising drug for fighting PH, which is still in clinical trials.

He’s also been enjoying becoming a Reds and Bengals fan, exploring all the local parks, sledding during his first ever snowfall, and completing his first ever baseball season.

Like many children born with CHD, Hank has been through a lot his first few years of life (2 heart surgeries, 8 cardiac catheterizations, a dozen hospitalizations). However, now our family has the comfort that he’s not battling this disease alone. We have, without hesitation, put all of our faith and trust in the PH team here and are endlessly grateful to have them by our side.

Hank especially looks forward to anytime he gets to come “take pictures of his corazón” and visit Dr. Miles or Dr. Critser 😊"

11/21/2025

My experience with pulmonary hypertension has not only been sad, hard, exhausting, and frustrating, but it has also been funny, weird, and jaw-dropping. Who knew that being diagnosed with pulmonary hypertension could completely turn my life around? When I got diagnosed, I was only three months away from graduating high school. Just short before, I was in such heart failure from not even knowing I had this disease. I was completely wheelchair bound, kicked out of my classes, and moved into homeschool online; missing a bunch of fun senior moments. My doctors were not going to give up on me at all, they had so much more hope than I did. To make sure I made it to my graduation, and because of my health, we all knew we had to move fast. I ended up having to stay in the hospital for a long time getting used to my medication that made me worse before better. However, with all of my medication combined, patience, guidance, and support, I was able to walk the stage at my graduation and attend the last few weeks in my normal classes just with my oxygen! Not only was I getting better, but I was also able to be as normal as possible, in the most crucial moments of my senior year. Not only do I thank my mom and friends for their support, this is all possible with the help of Melissa Magness and Dr. Russel Hirsch. I have so much love for them as my PH team.

-Olivia

11/21/2025

In the Spotlight: When a virus attacked an Indianapolis toddler’s heart, his family turned to us for hope. Today, Santi fights on with the help of world-class heart specialists and a Berlin Heart device as he awaits a transplant. 💙 Learn more about the care keeping him strong in the comments via FOX59 News

11/19/2025

Dr. Ryan Moore, BS’04, MD’08, is an advocate and trailblazer in a groundbreaking technology poised to revolutionize how surgeons operate on children’s hearts.

11/18/2025

Today, we’re celebrating two incredible members of our PH team: Kimmy and Sam, the dynamic duo RN coordinators who truly form the foundation of our program. They are the first point of contact for families and the steady hands behind the scenes - triaging patient concerns, navigating insurance approvals, guiding families through medication titrations, coordinating visits and procedures, and being that reassuring presence during clinic visits.

Kimmy brings calm, organization, and thoughtful leadership to every challenge. Her attention to detail ensures smooth workflows, and her commitment to patient care is unmatched.

Sam shines with adaptability and problem-solving skills, always ready to tackle the unexpected with grace and positivity.

Their work often goes unseen, but it is absolutely vital:
Keeping patients safe and out of the hospital
Managing complex scheduling
Handling insurance and specialty pharmacy hurdles under tight deadlines
Supporting families every step of the way

We couldn’t do what we do without their dedication, compassion, and teamwork. Kimmy and Sam are the glue that holds us together and the heart of our PH program.

Join us in thanking these unsung heroes for everything they do!

11/17/2025

11/13/2025

"In November 2022, our sweet Lily, who had always been a healthy, active little girl, was diagnosed with severe Pulmonary Hypertension (PH) at just 7 years old. After weeks of illness, a heart murmur led us to a cardiologist. The day after Thanksgiving, an EKG and echocardiogram revealed right-sided heart enlargement and ultimately, PH - a rare and life-altering diagnosis.

During a two-week hospital stay at Cincinnati Children’s, Lily underwent countless tests. Doctors discovered she carries the RASA1 gene, which causes vascular abnormalities. While she had no internal AVMs at the time, she did have small red spots on her skin. The cardiac and genetic teams believe she was born with this and had been compensating her whole life.

To help relieve pressure in her lungs, Lily had a hole placed between the upper chambers of her heart. This helps her heart function but causes mixed blood flow, leading to flushed cheeks or blue lips when she’s active. She tires easily and can’t always keep up with other kids.

Lily’s treatment includes many medications, but the most intense is Remodulin, a continuous infusion through her arm or leg. The site changes every 3–8 weeks and causes severe pain and swelling for days. She often needs a sling or wheelchair and round-the-clock meds just to manage the discomfort. This treatment has changed her daily life - no more regular showers, baths, or spontaneous fun.

In January 2024, Lily caught the flu and was hospitalized for 36 days in the ICU**.** She came close to needing ECMO multiple times. An MRI revealed hundreds of AVMs in her lungs, which hadn’t been there a year earlier. That’s when the conversation turned to something we hoped we’d never need: a lung transplant.

In March, Lily was officially listed for new lungs. She now wears oxygen 24/7, which has been a tough adjustment. When the call comes, we’ll have to drop everything for a high-risk surgery. She’ll likely be on ECMO post-transplant and spend 3–4 months in the hospital, followed by a year of isolation and homeschooling to protect her fragile immune system.

Even after the transplant, Lily’s life will change. But if anyone can adapt, it’s Lily. Her strength, resilience, and spirit are unmatched.

She is the only known person in the world with both PH and the RASA1 gene. Her journey is unique, and her courage is extraordinary.

We are endlessly grateful to the PH team at Cincinnati Children’s Heart Institute. They’ve become like family. Every call, every text, every moment, they’ve been there.

💜 Please keep Lily in your thoughts. She is truly one of a kind, and we are so proud of her every single day."


🎥 Learn more about Lily’s story in this video her classmates watched:
https://youtu.be/NGnrxB5GKTg?si=1WUKvlEXJwKGeLku

11/11/2025

Today, we proudly recognize Dr. Adam Powell — pediatric cardiologist, medical director of Ambulatory Cardiology, and medical director of the Cardiopulmonary Sports Clinic. Dr. Powell cares for patients across Burnet, Green Township, and Southeast Indiana.

Before his medical career took flight, Dr. Powell served with distinction in the United States Air Force for seven years, achieving the rank of Major. Stationed at Wright Patterson AFB and Shaw AFB, he served as a general pediatrician, providing care to the children of fellow service members. His dedication earned him both the Air Force Achievement Medal and the Meritorious Service Medal.

Thank you, Dr. Powell, for your service to our country and your continued commitment to our patients.

11/06/2025

"My son's name is Kyle and he was born with DORV, VSD, and coarctation of the aorta. He had an arterial switch at Cincinnati Children's at 3 days old on 10/31/2008. He is still followed by Cincinnati Children's Heart Institute and will be 17 next month. He is a junior at Ryle High School. Growing up he has played all kinds of sports, including football, baseball, basketball, shotput, and discus. He is now 6’5”!"

11/03/2025

At Cincinnati Children’s Heart Institute, we’re proud to stand with patients and families affected by pulmonary hypertension (PH) — a rare but serious condition that affects the blood vessels in the lungs and heart.

Our Pulmonary Hypertension team works every day to provide expert care, advance research, and bring hope to children and families living with PH. 💙

This month, we raise awareness for early diagnosis, innovative treatments, and the incredible strength of our patients. Together, we can make a difference.

Learn more about our program: https://www.cincinnatichildrens.org/service/p/pulmonary-hypertension

10/31/2025

Boo to you from our heart crew!! We hope you have a safe and spooktacular Halloween!

Drop your photos down below - we want to see your costumes! 🎃

10/28/2025

"At our 20-week ultrasound, we learned that something wasn’t right with Aiden’s heart. We traveled to UK HealthCare, where they confirmed he had Hypoplastic Left Heart Syndrome (HLHS). From there, we were referred to Cincinnati Children’s Heart Institute for further evaluation. After several tests, HLHS was confirmed, and we were informed about the procedures Aiden would need.
On July 22, 2024, Aiden was born at Cincinnati Children’s. He was scheduled for his first open-heart surgery—the Norwood procedure. However, doctors discovered an issue with his tricuspid valve, so on July 29, 2024, Aiden underwent a Hybrid Norwood procedure (HX Cardiac Catheterization). He did well with the surgery.
Then, on September 11, 2024, Aiden had his first open-heart surgery—the HX Norwood procedure. It was tough on his little body, but thanks to the incredible care at Cincinnati Children’s, he pulled through.
Soon after, Aiden’s oxygen levels began to drop drastically, sometimes falling into the 20s. He had to be placed on a ventilator multiple times. Eventually, we learned that his vocal cords had been damaged. On October 30, 2024, Aiden underwent a HX Cricoid Split (neck surgery), and after that, he began to flourish.
On February 13, 2025, Aiden had the HX Bidirectional Glenn procedure with perfusion. During this surgery, doctors also performed a tricuspid valvuloplasty to repair the leaking valve and a pulmonary artery stenosis repair to address damage caused by the flow restrictor. Although there were complications, once again, the care at Cincinnati Children’s Heart Institute helped Aiden thrive.
After 257 days in and out of the hospital and the Ronald McDonald House, Aiden finally came home for the very first time on March 14, 2025.
We will forever thank God for Cincinnati Children’s. They will always hold a special place in our hearts for the amazing care they gave Aiden. He has continued to flourish at home."