Stories about: Heterotaxy syndrome

A biventricular repair for Jayce’s one-of-a-kind heart

Jayce, born with heterotaxy syndrome, crawls through a tube at the playground.Amanda Mattioli was working in Afghanistan as a government contractor and had just completed a whirlwind round of travel to three separate continents when she learned she was pregnant.

The helicopter unit that took her back to the main base, so she could return home for her pregnancy, gave her a unit sticker to commemorate her baby’s first helicopter ride. Little did she know it would also mark the beginning of a much longer journey for her and her son, William “Jayce” James.

Read Full Story | Leave a Comment

Molly’s story: Care for a rare condition close to home

Curly-haired, bright-eyed Molly Leary pushes a plastic baby stroller filled with a pile of books and one baby doll. She spends a sunny afternoon on the lawn reading, singing ”Itsy Bitsy Spider” and playing her purple guitar. She sits down to read with her mom Kerry and then pops up into what feels like a never-ending spin. “Dizzy?” Kerry asks. “Nope!” says Molly with a big grin. Her love of life is infectious.

Watching this unstoppable five-year-old twirl around in circles, you’d never know that she’s quite mixed up on the inside. Molly was born with heterotaxy, a rare congenital defect that results in various organs forming on the opposite side of the body. She spent the first eight months of her life at Boston Children’s Hospital, as detailed in the below timeline.

Read Full Story | Leave a Comment

Social media helps bring very sick patient to Children’s

Pierce Heilinger recently underwent a complex surgery at Children’s Hospital Boston that may have saved his life. The young patient’s story has resonated deeply with parents who use social media, and even though many of those people had never met the child or his family, that online support system was instrumental in bringing him to Boston.

Pierce has heterotaxy syndrome, a birth defect that may involve the heart and other organs. Normally the human body has organs that grow on both sides, like the lungs or kidneys, and others that develop on a specific side, like the stomach or liver. But with cases of heterotaxy one or more of those organs may be reversed, including the heart.

In researching her son’s condition, Pierce’s mother Jessamyn learned that despite being an extremely rare condition Children’s Hospital Boston has performed over 100 surgeries to correct heterotaxy syndrome in the past few years.

In her search she also came upon a group of internet-savvy parents—many who have children with heart defects— including several whose kids were treated at Children’s. Collectively these moms tapped into their individual social networks and through forums like Facebook, Twitter and blogs they were able to raise enough money and awareness around Pierce’s situation to bring him to Boston.

(Watch the following CNN coverage of Pierce’s journey to Children’s.)

Baby Pierce’s condition may be rare, but the strength and passion his mother showed in arranging his care is not. There are tens of thousands of parents whose children are battling illness, and like Jessamyn many are using social media to educate people about their conditions or support others facing similar situations. Individually these outlets represent a small portion of the Internet population, but together they have a powerful voice that can be heard by millions.

The movement that brought baby Pierce to Children’s is proof of their collective strength.

As the online experience becomes more personalized, this type of interactive communication will become more and more common. And for parents dealing with the stress of childhood illness that deeper connection to others who share their fears and frustrations can be very comforting. But like with all online medical information, these forums should be approached with a buyer beware mentality; health information is only as valuable as the source providing it. With so many medical sites and forums competing for digital readership, more than a few inaccurate pages have attracted followers.

Fortunately for parents interested in pediatric heart conditions, there’s The Heart Center at Children’s Hospital Boston’s Facebook page. Our page offers families a secure place to interact with each other and get plenty of factual information on pediatric heart health. It currently connects over 2,000 families and is monitored by a pediatric cardiology specialist who can direct people with specific treatment questions to the proper channels.

If information on heart health and treatment is important to you, or you are looking to connect with other families who have been touched by a pediatric heart condition, please join our page and help us grow the conversation online.

Read Full Story | 7 Comments | Leave a Comment