Jackson’s life as a child with congenital heart defects

Patient Stories |

02/11/2024

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Jackson Rosenberry was born with multiple heart defects, but he is living his best life now – as a big brother, kindergartner and maybe a future nurse.

By Maureen Gilmer, Riley Children’s Health senior writer, mgilmer1@iuhealth.org

When Jennifer Rosenberry saw the look on the cardiac sonographer’s face, she knew something wasn’t right.

She’s a nurse, after all, so she knows her way around the medical world. But she wasn’t prepared for her newborn to be diagnosed with congenital heart defects.

“I had a normal pregnancy. I didn’t know anything was wrong at all,” said the southside Indianapolis mother.

Until that first echocardiogram.

It was the day after Jackson Rosenberry was born in 2017 that his parents, Jennifer and Shane, found out there were complications with their first child. He first went to the NICU at the southside hospital where he was born (and where his mom works) when he was experiencing low blood sugar.

The echo, a test that uses high-frequency sound waves to look at the heart and nearby blood vessels, revealed irregularities, and Jackson was transferred to Riley Hospital for Children.

The diagnosis was Shone’s complex, an umbrella term for a rare congenital cardiac malformation that affects the left side of the heart. In Jackson’s case, he had an interrupted aortic arch, multiple ventricular septal defects, a parachute mitral valve and bicuspid aortic valve.

“I had the standard anatomy scan in 2016 when I was pregnant,” Jennifer said. “Back then, they didn’t do all the extensive testing they do now. They saw four chambers in the heart and it looked fine. Nowadays, they would see the defect.”

Jackson had his first surgery at a week old, followed by another the following January. Heart surgeons Dr. John Brown and Dr. Jeremy Herrmann performed both operations.

Dr. John “JJ” Parent, Jackson’s cardiologist, has been by the family’s side since those early days at Riley.

“He’s really good at drawing diagrams, which helped my husband, who has no medical background,” Jennifer said. “That’s something Dr. Parent continues to do at every appointment. He’s so good at breaking down the terms and telling us next steps.”

Jackson’s second surgery fixed the structure of the heart, but he battled supraventricular tachycardia (fast or erratic heartbeat also known as SVT) for quite a while, requiring multiple hospital stays.

Jennifer’s nurse training helped her identify the SVT.

“He’s very tiny, so I could see the veins bulging in his neck,” she said.

A cardio monitor at home helped pinpoint rhythm issues.

“As a nurse, I was able to read those rhythms, so I knew if it was SVT or not.”

Last month, Jackson, now 6, went into the cath lab at Riley for an ablation procedure performed by Dr. Mark Ayers.

“When we were talking about doing this procedure, he wanted to ask his questions,” Dr. Parent said of Jackson. “You don’t usually see that in such a young patient, but he is this super smart kid. For all he’s been through, to see that is really cool.”

Since the ablation, Jackson has had no recurrence of SVT. For the first time in his young life, he doesn’t have to take medications three times a day. He doesn’t have to eat a restricted diet. He can be the kid he wants to be.

“It was difficult for him not to be able to eat the same foods as his friends, and everything had to be timed around his medication,” his mom said.

“It’s kind of lifechanging for us.”

No longer does he need to take meds at 6 a.m., 2 p.m. and 10 p.m., but Jennifer still wakes up at 6 a.m. on cue.

For all his medical procedures, surgeries and hospital stays, Jackson shows no sign of slowing down today. He was running around a southside playground on a recent Thursday, testing out the slide and swings, and hitting baseballs like a champ.

Last fall, Dr. Parent gave the OK for him to play flag football, and he will play baseball this spring. Both Jennifer and Shane were Division 1 athletes in college. She played softball, and he wrestled.

In spite of – or maybe because of – Jackson’s medical complications as a baby and toddler, he has grown into a mature, active and friendly kindergartner with a tender heart, his mom said.

Tender as in kind, not fragile. Not anymore.

“He is really caring and a best friend to his little sister,” Jennifer said. “He is polite and wise beyond his years because he had to grow up fast.”

He is also a dapper dresser, Dr. Parent said.

“He dresses like a well-put-together 40-year-old man, and it’s so cool,” the cardiologist said. “I aspire to look that good.”

Jackson gets regular echos to see how his heart is performing, but for now it looks good, Jennifer said.

Before she became pregnant with Jackson’s little sister, Lucy, she and her husband went through genetic testing to see if there was anything that might point to heart irregularities, but the tests came back OK.

Still, she had fetal echos at Riley to be sure, and she took her daughter to Riley for another echo after she was born.

“Dr. Parent was there and got to hold Lucy,” she said. “It was nice to have the same team there, people who know us and know our history.”

On. Jan. 30, Jackson returned to Riley for a follow-up appointment after the ablation. Every time he visits the hospital, he insists on bringing donuts for the team, but especially for Dr. Parent.

“I obviously share them because I can’t eat 12 donuts,” Dr. Parent said, “but they really are excellent.”

“He has been wonderful,” Jennifer said of the cardiologist. “Jackson looks up to him so much.”

Jackson, who says he wants to be a nurse like his mom someday, agrees.

“He’s nice, he helps me,” the little boy said. “And he gave me a dinosaur.”

Dr. Parent, who will continue seeing Jackson once or twice a year, assuming the SVT doesn’t recur, returns the compliment.

“He’s a polite young man, thoughtful and highly intelligent, and when he comes in with his younger sister, you can tell how much they adore each other. That’s nice to see.”

Having a child with a heart condition can be overwhelming and often lonely, Jennifer said, but she is thankful for the people who have walked alongside her and her family these past six-plus years.

“Having that support is great. And the care at Riley is amazing.”

Riley Children’s Health is ranked among the best in the country by U.S. News & World Report for its cardiology and heart surgery program.

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