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.

7 thoughts on “Social media helps bring very sick patient to Children’s

  1. So happy Pierce is getting the care he deserves. Want to clear something up though: Heterotaxy does not always involve the heart. While many children with heterotaxy are born with mild to severe heart problems there are still many others that are born heart healthy. The children with heart problems are typically diagnosed early, but there are also cases where a child goes un-diagnosed until a problem occurs (appendix rupture, or a twisting of the bowels). It’s important the medical community knows there is no one textbook case of what heterotaxy is. These kids are like snowflakes…each one of them beautifully different.

  2. Baby Pierce you come from a big family of fighters so keep it up we love you

  3. Awareness is the key towards bringing people to a certain aim of being united in helping others. Being able to touch and influence others to lend a helping hand is one of the great things we benefit from the social media. I just wish that with the people’s prayers and help, Pierce will get the best treatment and care any baby deserves. God bless you Pierce. 

  4. Loved the clip.  So glad to have had the opportunity to meet Pierce – and you.  Good luck in this journey.  My prayers will include you both. Hopefully our paths will cross again – in a reunion to include Pierce and Liam.  Love ya.

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