Zoe and John's Hope for Leo at Duke

On Monday, March 3, 2025, my daughter Zoe and son-in-law John, got devastating news. In an instant their dreams and exhilaration about having twins dissolved into fear and uncertainty. A routine anatomy scan revealed that one of their unborn twins, Leo, has Hypoplastic Left Heart Syndrome, sometimes called “half a heart.” The initial prognosis was not good.

Then, a few weeks later, a glimmer of hope. In order to fight for Leo’s life, they now face multiple open heart surgeries at Duke Children’s Hospital in Durham, North Carolina. The first surgery, necessary only days after birth, will require Leo to be hospitalized for up to three months. The second open heart surgery will be a couple of months later. Zoe and John will be looking at over $20,000 in un-covered expenses related to medical treatment and temporary housing just this year alone. I am reaching out to you, to help them with that burden.

Their situation is especially unique and complex because they are having twins. Blessedly, Leo’s brother, Enzo, is not showing any signs of complications. But this young couple will soon have two newborns to care for. One in the hospital and one at home. Having twins is daunting enough, but having one with special medical needs makes everything more challenging. Zoe and John are working so well together to face the situation head on. Your support can help.

This is their story of hope.

Zoe and John Romano found out they were pregnant with twins on November 18, 2024. It is a spontaneous twin pregnancy (no fertility drugs) that surprised the entire family. Zoe laughs about how John’s hands were shaking on the steering wheel all the way home from that appointment. By that evening his hands had stopped shaking but his head was reeling as he crunched the numbers for 2 cribs, 2 car seats, 2 high chairs…double of everything! Zoe was also reeling as she began imagining nursing two babies, changing diapers on two babies, twin bonding, being the mother of twins! It was a very happy and exciting time. Hopes and dreams floated all through our extended families as these will be the first grandbabies, and first great-grandbabies, on both sides.

Zoe’s early pregnancy was not atypical, but it wasn’t easy. She had a lot of morning sickness, which her doctor attributed to the excess of hormones in a twin pregnancy. Her job as a teacher working with the youngest school aged children exposed her to a lot of early childhood illness. The weekend before her routine 20 week anatomy scan she ended up in the hospital after testing positive for COVID and Flu A. She was only there a couple of days, but it caused her to have to reschedule the anatomy scan to week 23. It was at that 23 week scan, on March 3, that the doctor saw the defect in Baby B’s heart and diagnosed Hypoplastic Left Heart Syndrome (HLHS), a defect that occurred in the first few weeks of his development in the womb. Our world came crashing down.

There are no words to describe what this did to Zoe and John. Devastated, heart broken, inconsolable, none of them do justice to the effect of that diagnosis on their soul. The very next day they met with a pediatric cardiologist from a not too distant hospital; our local hospitals are not equipped to deal with HLHS. Her findings seemed even more alarming as a valve necessary for a successful surgical outcome appeared not to be open. They were told Baby B might not even make it to delivery. They were given the option of selective termination. The situation was dire. Before they even got out of the car from that visit, shaken and in turmoil, they came to the decision that selective termination was not an option for them. They would give Baby B the chance at life even if it was brief. They would give Baby A the chance to be beside his brother for as long as possible.

John and Zoe went into seclusion for about three days to mourn and process and mourn. They decided on names for the twins. They couldn’t bear to keep calling him Baby B. They named him Leonardo, Leo for short. The name means lion-hearted, or brave as a lion. He was given a name of bravery and resilience with hope still fluttering in their hearts. They named his twin brother Lorenzo, nicknamed Enzo.

Zoe began regular monitoring by her obstetrician (OB), a maternal fetal medicine doctor (MFM), and a pediatric cardiologist. Every Monday she goes in for an ultrasound of the babies at the MFM office. Some Mondays the appointments are late in the afternoon and John can go. Some Mondays they are earlier and I go with her. Every Monday is terrifying. We hold our breath until we see that Leo is breathing. Our hearts beat too fast in fear that his tiny one isn’t.

On their second visit to the pediatric cardiologist, on April 9th, they got a glimmer of hope. The valve she was worried about seemed to be open. The unknown “bright spot” on Leo’s first echocardiogram seemed to be diminishing. Maybe he could be a candidate for surgery. There was a lot to consider, because this condition requires 2 open heart surgeries in the first 6 months of life, another before the 3rd year and may eventually require a heart transplant.

The emotional roller coaster is unbearable. It’s a hard time and an uncertain time and the combination can be paralyzing, but John and Zoe sprang to action researching options and hospitals. They kept surgical outcomes, longevity, and quality of life, foremost in their minds. Duke Children’s Hospital came to the top of the list. As they read more and more about Duke they became more and more optimistic.

Duke, only 3.5 hours away, is ranked number 4 in the U.S. for HLHS surgeries in terms of outcomes. A surgeon there (Duke pediatric heart surgeon, Joseph Turek, MD, PhD) developed a new approach for the first, and most high-risk, of the three surgeries Leo would need. His approach increases the odds of survival from an average of less than 88% to more than 97%. You can read more about him here https://www.dukehealth.org/blog/advances-norwood-procedure-lower-risk-babies-hypoplastic-left-heart-syndrome

Hope bubbles up. Would Duke accept Leo as a candidate? On April 22, John and Zoe travelled to Durham and met with members of the cardiac team at Duke. After four hours of evaluation, the team assured them that Leo’s case could be treated if he makes it to 36 weeks gestation (May 30). They reassured Zoe that Leo would likely make it to delivery, as most babies at this stage, in this situation do. Best of all, they said they would accept the case and begin making arrangements and appointments. But they want Zoe in Durham by mid May. Hope floats!

Today, they are scrambling to find a two/three bedroom place near the hospital that will give a short term lease. John, Zoe and Enzo will need some space that meets the requirements of a family. They need at least one extra bedroom for grandmothers to come and stay to help with care. With one infant at home and one in the hospital, 3 adults on rotation will help Zoe and John keep some sense of order and control.

Hope. We’re holding on to hope.

Thank you for hoping with us.