Mom is never far from her son’s side as he waits for a new heart

By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

Megan Hay spends her days and nights by her son’s side in the Heart Center at Riley Hospital for Children. The South Bend mom doesn’t go home because for now her world is right here in this hospital room.

“I sleep in this recliner next to his bed,” she said. “As long as he’s OK, I’m OK.”

Edward Sandefur, 10, has been at Riley since June 16. Today marks 131 days. He was transferred to Riley from the emergency department of a South Bend hospital, where his mom took him after she became concerned that he was dehydrated following a bout with the stomach flu.

“Within an hour of getting to the emergency room, his oxygen saturation levels started dropping and he had to be intubated after that,” she said.

She knew to be cautious because her son, who seemed perfectly healthy at birth, was diagnosed with a congenital heart defect when he was 6 years old.

It was during a regular checkup with his pediatrician when the doctor noticed a faint heart murmur, she said.

“We had an Echo done a few weeks later. Within an hour of leaving, they were calling, and I knew then, this isn’t good.”

SERIOUS HEART CONDITION

At that time, Edward was diagnosed with transposition of the great arteries (TGA) with Ebstein’s anomaly – both serious heart conditions.

But for the first six years of his life, he was a pretty typical kid, his mom said.

“We never suspected anything. Looking back, there were some signs. He couldn’t run as much as other kids when he was playing T-ball. He would sit down sometimes, and I would tell him to get up and quit being dramatic. Now, I’m like, oh my gosh, he was really tired.”

Since that day in 2018, Edward has seen Riley cardiologist Dr. Marcus Schamberger twice a year for tests on his heart. In April of last year, he underwent a pulmonary artery banding procedure, performed by Dr. Mark Turrentine, in preparation for TGA repair surgery.

They didn’t make it to the surgery earlier this year because a cardiac MRI showed Edward’s heart function wasn’t where it needed to be, so a pacemaker was implanted.

Since Edward fell ill in June, he’s been battling kidney problems too, requiring dialysis for several weeks. In August, he received a Berlin Heart, a ventricular assist device to keep his heart pumping. Finally, about six weeks ago, Edward’s kidneys improved enough that he no longer required dialysis, clearing the way for him to be listed for a heart transplant.

WAITING FOR A MATCH

Hay will never forget the moment she found out he was listed.

“I was outside on a phone call, and I was going back up to the floor while Edward was down getting a new PICC line placed,” she recalled. “Within minutes, one of the transplant coordinators handed me the letter showing that he had finally, officially been listed.”

She still gets emotional when she remembers how she felt in that moment.

“It felt good because for the longest time we were just sitting and waiting – waiting for the kidneys to get better so we could be on the list. When he came back up, he didn’t even make it all the way into the room before I showed him the letter and he started crying.”

They celebrated later over a game of UNO with the nurses and child life specialists. Now that Edward is on the transplant list, his care has been shifted to Riley cardiologist Dr. Robert Darragh, who will see him through transplant and beyond.

“It is definitely a good feeling now to wait for the right heart to come along some day,” Hay said, knowing they must be patient.

“There are kids here who have been waiting for months and months. We pray that when the right offer comes, that he’ll be strong enough, so his body is ready for it.”

KEEPING FIT IN REHAB

That’s where Edward’s busy therapy schedule comes into play. His days are filled with all kinds of therapy – and much of it is hard work. He is among the lucky patients able to take advantage of the Heart Center’s new Inpatient Cardiac Rehab Service, a mini gym housed on 3 West.

“Some days PT is really hard for him because he doesn’t feel good, but he knows that the hard stuff is the stuff that’s going to make him stronger to be able to ultimately go home one day,” Hay said.

While she says her son has “a very loving and giving heart,” he also has “a feisty personality and a big attitude when he doesn’t want to do something.”

Luckily, physical therapist Kristen Bartheld is able to push Edward when he is in a mood, Hay said.

Edward, whose dad comes down on the weekends to spend time with him, keeps up a busy schedule of therapy, school, video games and building LEGOs in his free time while he waits for news of a heart.

In the meantime, his mom has appreciated getting to know other parents on the floor, as they support each other and share stories.

“It’s been a big help, especially being so far from home,” she said. “We’re all here together fighting and praying for our kids, and we like to pray for all the other little ones also.”

Riley Hospital’s Cardiology and Heart Surgery program is ranked sixth in the nation by U.S. News & World Report.

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org