Tuesday 02 Sep 2014

Information and opinions presented here do not always represent the views of the American Heart Association.

STORIES FROM THE HEART: Family faced heart-defect diagnosis before birth – again; outcome better the 2nd time

Published: 2:12 pm CDT, December 3, 2013

When Greta Hurst was about 15 weeks pregnant with her second child, doctors told her and her husband Darnell that the baby’s heart would not survive.

But little Mariah had a strong will to live. She persevered for 31 weeks before being stillborn. The family was told she likely had a random defect.

When Greta became pregnant again, she prayed for a healthy baby. Imagine her devastation when the doctor told her during a scheduled ultrasound at 22 weeks:  “I’m sorry. Your baby has a heart defect.”

She and Darnell were numb with fear.

“I was probably in more disbelief the second time,” she said.

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The couple wanted to know how bad the defect was and if it could be fixed. They soon found answers at Children’s Hospital of Philadelphia’s Fetal Heart Program.

An MRI helped diagnose the baby’s heart condition, a complex congenital defect called Pulmonary Artesia with Heterotaxy Syndrome and a single ventricle. In layman’s terms, it means the baby’s lungs were not connected to his heart, and he has only one pumping chamber instead of two.

The couple was assured the defect could be repaired in a three-stage surgery after birth. So they waited, and Greta’s water broke the day before her due date in February 2008.

“It was a balance of being nervous and excited at the same time,” Greta said.

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They named their baby boy Bronson, and two days later endured his first open-heart surgery.

Greta stayed by his side for the six weeks he was in the hospital. His sister, Alicia, often stayed with her grandparents, while Darnell worked and visited nightly as much as possible.

Bronson following his first open-heart surgery.

Once Bronson went home, the challenges continued. For instance, he had severe reflux and aspiration, so he was fed by a tube to ensure he would be strong enough for his second heart surgery.

“The weeks and months that followed were filled with the high demands of a rigid feeding schedule, many doctor appointments and several runs to the ER with respiratory illnesses that required additional hospital stays,” Greta recalled.

Bronson was six months old when he had his second heart surgery. His third was in 2011, when he was 3½.

“Even with the repairs, and awesome surgery they do, it really is only a repair,” Greta said. “It doesn’t fix them like they have a normal heart.”

Along the way, the family has had to manage Bronson’s physical and behavioral delays, including feeding therapy to help Bronson learn to eat by mouth. He was partially tube fed until his third birthday and had his feeding tube removed just before turning 4.

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The family sported “Team Bronson” shirts when they took part in the 2011 American Heart Association Heart Walk in Philadelphia, near their home in Lancaster, Pa. And Greta created a video to share her family’s story and to bring awareness to congenital heart defects (CHDs).

Bronson and sister Alicia a few months after his second heart surgery.

“We need more funding to better understand what causes CHDs and how to prevent them,” she said. “We need to detect and diagnose CHDs as early as possible. While much progress has been made, we need to develop new treatments for CHDs so that children undergo fewer invasive surgeries and improve the long-term prognosis for children with CHDs.”

Up to 1.3 million Americans alive today have some form of congenital heart defect. In the United States, about 32,000 children are born with a heart defect each year. The causes of congenital heart defects are still under investigation, but scientists and physicians are making progress.

The American Heart Association is helping find answers. The American Heart Association is the nation’s oldest, largest voluntary organization devoted to fighting cardiovascular diseases and stroke, and is the No. 1 funder of research outside the federal government, having invested more than $3.5 billion.

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If you peeked in on Bronson at school today, you wouldn’t know that he has a pacemaker to manage his low and irregular heartbeat or that he takes daily medications to keep his heart and immune system healthy. You’d find an active kindergartner with lots of energy like many of his classmates.

Still, since he isn’t cured, his future is uncertain.

“My husband and I have the attitude you can’t worry about things that may or may not happen. You trust your physicians and God to get you through,” Greta said. “We try to enjoy him and his health the way it is and celebrate him for who he is.  We say a prayer every time he goes to see his cardiologist that things look well and everything is functioning well.”

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Do you know a “Story from the Heart” we should tell? 

Send an email to stories@heart.org that’s as brief or as detailed as you’d like.

Previous “Stories from the Heart” include:

Personal chef sheds 100 pounds, gains new perspective on food

5-year-old with rare stroke issue ‘doesn’t know anything else than to smile’

She overcame a stroke; her sister didn’t, stoking her passion to educate others