Pierce featured on CHB’s Website

Social media helps bring very sick patient to

Children’s

by Tripp Underwood on December 21, 2011 (taken from CHB’s blog)

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 involves 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.

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.

Advertisements

Baby Pierce Update

Just got off the phone with Jessamyn and Pierce is doing astoundingly well.  For a family that was told surgery would most likely be a death sentence things have really turned around since Pierce was in Boston.  Pierce had surgery on Monday afternoon, went in around 1pm and came out around 8pm and has since, he had a TAPVR repair, AV canal repair, and other repairs with no name because Pierce is so complex that there are no standard repairs. 

 Critical 48 hours after open heart surgery have been completely uneventful with no codes or desats.  He is following his post op recovery to a T.  

I have to say this…Children’s Hospital of Boston never gives up on kids.  They bring hope to kids that others have given up on.  Not just in Pierce’s case but I personally know of 5 other families in the last 6 months whose children were sent home to die by another hospital only to be giving the tremendous gift of life by the Cardiac team at Boston.  CHB is in a league all its own.  Thank you, thank you, thank you, CHB for never giving up…as a Mom with a child who carries an 80% mortality rate you have brought me nothing but hope, and you are doing that every single day for so many families.  Not only do they have the best outcomes but their outcomes are on the absolute sickest children in the world. 

As Pierce recovers beautifully from his extremely complex surgery another little boy named William is set to go to step-down at CHB.  William was another Heterotaxy boy who was sent home to die by another hospital.  Just 2 short months at CHB William is thriving for the first time in his life! For the first time in his life he is all smiles and off a ventilator.  Children’s Hospital of Boston has given these two Heterotaxy families Christmas Miracles!  And from the very very very bottom of my heart and the Heterotaxy Community THANK YOU BOSTON! 

 

Meet Baby Pierce

Meet Baby Pierce.  He has a very similar type of Heterotaxy that Logan has.  Jessamyn (Pierce’s Mother), myself, and many others fought like mad to get him transferred to a heart center that has more experience with  these types of children.  That was going to be his only shot at living.  Pierce is so sick that even in the best hands his recovery is going to be very hard.

For a Preview of the CNN piece please veiw the short promo piece on the below link (takes a little time to load…) 
http://i.cdn.turner.com/cnn/.element/apps/cvp/3.0/swf/cnn_416x234_embed.swf?context=embed&videoId=health/2011/12/16/pkg-saving-baby-pierce.cnn
Finally, after the fight of our lives, Pierce arrived safely in Boston last Fri. night.   He is going into surgery today.  Today is the day that Pierce’s heart will get fixed.  Please keep this family in your hearts today as Pierce under goes a long long long surgery.

For the full story on Pierce please tune in to Anderson Cooper 360 on CNN tonight.  This is a very important story.  This is a story not only about just Pierce but a story about how difficult our current medical system makes it to get our children the best care we can.  This is a story that affects us all.

And please remember to check out The Heterotaxy Network on FB we have a small but mighty group of heterotaxy families.   I can guarantee you that there is no group on the planet more knowledgable about heterotaxy than our humble group of families.