True’s Story: Heart Care & Adoption

The Journey of a Resilient Heart

True Beethe is a third grader who loves baseball, volleyball and riding bikes around the neighborhood. He is funny, full of life and is the kind of kid who lights up every room he walks into.

He is also a boy who has been through more than most adults will ever face.

True was born with a severe and complex form of congenital heart disease (CHD), a double outlet right ventricle (DORV) heart defect. In simple terms, his heart has only one functioning pumping chamber, a single ventricle, where a typical heart has two. That one chamber must do the work of pumping blood to both the lungs and the body. It is a rare and serious condition that requires exceptional medical care from the very beginning of life.

Congenital heart disease affects about one in 110 children, according to the American Heart Association. True's form is among the most complex. Twenty-five years ago, children with his diagnosis likely would not have survived. Thanks to advances in pediatric cardiac care, True is thriving with the dedicated support of his care team at Children's Nebraska.

The Impact of Expert Pediatric Cardiac Care

From birth, True's team worked to develop the best possible care plan so True has adequate blood flow to his lungs, heart and throughout his body. His unique anatomy meant that no one-size-fits-all approach would work, so his care team needed to pursue a series of procedures.

Thanks to the leading pediatric cardiac surgery and cardiac catheterization teams at Children’s, with a large breadth of services, True has been able to undergo a series of procedures, all in one place. He has had approximately five surgeries and 10 cardiac catheterizations. Each procedure was a step forward, and each one bought him more time, more life and more moments with the people who love him.

Ali Ibrahimiye, MD, a cardiothoracic surgeon at Children’s, performed all five of True’s surgeries.

“We had to come up with creative ways to re-route blood flow to True’s lungs”, says Dr. Ibrahimiye “He has undergone a series of operations, including pulmonary artery banding and the Norwood, Glenn and Fontan procedures. His last surgery was in 2022.”

Today, True is closely followed by his care team at the Dr. C.C. and Mabel L. Criss Heart Center at Children's Nebraska. His cardiologist, Dr. Jason Cole, is the medical director of the Advanced Pediatric Heart Failure and Transplant Program. Dr. Cole has known True since he was a baby. He describes True as one of the funniest, most resilient kids he has ever met — the kind of patient who walks into clinic and instantly makes everyone in the room smile.

True does know his body has limits. He gets short of breath when he runs. Sometimes he has to sit out when his friends keep playing. But his outlook is simple: keep going and don't stop.

From a Hospital Room to a Home Full of Love

True's medical journey is remarkable on its own. But woven into that story is something else entirely — a moment of human compassion that would change the course of his life forever.

On Jan. 19, 2022, Amy Beethe, MD, a cardiac anesthesiologist at Children’s Nebraska, walked into the pre-op room to meet her patient. She found True sitting there alone. He was four years old, scared and about to undergo heart surgery without a single family member by his side.

Dr. Beethe called True's social worker. She learned they had been struggling to find foster placement for True because of the complexity of his medical needs. Almost as an aside, the social worker asked whether Dr. Beethe might be an option. She didn't know that Dr. Beethe was, in fact, a licensed foster parent.

Dr. Beethe called her husband and told him about the little boy. They agreed to welcome True into their home.

By Feb. 2022, True was living with the Beethes. Not long after, he was adopted.

The Beethe family didn't stop there. They also adopted True's biological sister and helped find homes for his four other biological siblings. Two of those siblings are with another Children’s anesthesiologist, one is with Dr. Beethe’s sister and one is with her husband’s brother. True’s biological siblings were able to stay close to one another, woven into one network of people who chose to show up for these children.

For the Beethe family, True's heart condition was never the defining part of his story. It was, in many ways, the thing that brought him home.

Pediatric Heart Care for Every Stage of the Journey

True is doing well right now. He is active at school, participates in sports and plays with his siblings. He is even on a Heart Heroes wiffle ball team led by his heart surgeon, Dr. Ibrahimiye.

His care team focuses on the present while preparing carefully for what may come next.

“True’s care has been remarkable,” says Dr. Beethe, “While cardiology appointments are stressful, it is comforting to know that my son is in the best hands.”

True's surgeries were not a permanent solution. At some point, he will likely need a heart transplant. His team is doing everything possible to give him as much time as they can before that day comes.

If a heart transplant is needed, the Beethe family will not need to travel far. Children's has the Advanced Pediatric Heart Failure & Transplant program right here in Omaha. The program provides comprehensive care for children at every stage of heart failure, from initial diagnosis through heart transplantation and long-term follow-up. All heart transplant patients are cared for in the specialized Cardiac Care Unit by providers trained in intensive cardiac care. When patients turn 18, the Criss Heart Center team works to transition patients smoothly into adult care.

In addition to Omaha, Children’s conducts Pediatric Cardiology and Adult Congenital Heart Disease outreach clinics across Nebraska, Iowa and South Dakota, providing the same level of exceptional cardiac care closer to our patients’ homes. These outreach clinics mean that congenital heart disease patients like True don’t need to travel far for their routine appointments.

The Heart of What We Do at Children's Nebraska

True's story reflects what is possible when exceptional medical care meets a community willing to show up for its children. His surgeons found creative solutions when his anatomy defied convention. His cardiologist has guided him and his family through years of complex decisions. And a chance encounter in a pre-op room gave him the family he deserved.

The team at Children's — cardiologists, cardiothoracic surgeons, cardiac anesthesiologists, cardiac intensivists, nurses, social workers, child life specialists and more — collaborates every single day for kids like True.

The Criss Heart Center provides the full spectrum of care for pediatric heart patients. From minor murmurs to the most complex congenital heart defects, our team is equipped to provide the highest quality care.

Children's Nebraska Cardiology Programs and Services:

• Adult Congenital Heart Disease Program

• Advanced Pediatric Heart Failure & Transplant Program

• Aortopathy Program

• Cardiac Neurodevelopmental Program

• Cardiac Rehabilitation

• Cardiovascular Genetics

• Electrophysiology

• Fetal Heart Program

• Fontan Program

• Interventional Cardiology

• Lipid Heart Clinic

• Pediatric Pacemakers and Implantable Cardioverter Defibrillators (ICD) Program

• Pulmonary Hypertension Program

• Single Ventricle Program