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.
Children’s topped all other hospitals in the country by ranking #1 in five of them: Cardiology/Cardiac Surgery, Neurology/Neurosurgery, Orthopedics, Urology and Kidney. Children’s is also the only hospital to place in the top three in all 10 specialties. The hospital ranked second in Diabetes & Endocrinology and Neonatology and third in Cancer, Gastroenterology and Pulmonary.
A hospital’s rank depended on how well it did in three areas: reputation, medical outcomes (such as cancer survival) and care-related indicators of quality (such as the number of patients, nurse staffing and availability of specialized programs). In all, 62 different hospitals ranked in at least one specialty, but only 8 hospitals ranked in all 10 specialties. The closest top ranking hospital to us is Children’s Hospital of Philadelphia, which ranked first in three specialties (Neonatology, Diabetes/Endocrine Disorders, and Pulmonary).
For two years, a team of surgeons, physicians, nurses and volunteers has been going to the West African nation of Ghana to operate on and care for children with heart conditions that would otherwise go untreated.
The team started a blog in March 2008 so others could follow them on their adventure and have updated it each time they’ve visited since. They’re there now and are blogging about the children they’re seeing, the challenges they’re facing and the work they had to do to get the whole operation up and running.
Keep an eye on the blog while the team is away and read a story and watch a video detailing the mission and why it’s so important to Children’s cardiovascular surgeon Francis Fynn-Thompson, MD, a native of Ghana.
Other children’s health stories we’ve been reading:
- The Wall Street Journal and NPR Health Blog quote Jim Lock, MD, Children’s chief of Cardiology, about the challenges of getting funding to develop cardiac devices and medications for kids. Why’s it so hard? It’s all about the economics. Read how Children’s is addressing the issue.
- New TB testing guidelines from the CDC for children 2 and over from Ethiopia and China could delay overseas adoptions. Several major adoption organizations object. Should these guidelines be relaxed? …