I received some very interesting information this morning from Kaylea Livingston of Ohio State University Medical Center and Nationwide Children’s Hospital.

I found that children born with heart defects are all but forgotten when they reach 18.

Caitlyn MacKay underwent heart surgery when she was just 90 days old, for an extensive heart defect. Throughout child-hood she had consistent care; she is living proof of what has been accomplished in recent years.

It is estimated that 30 to 40 thousand children out of a million are now receiving specialized care.

The way health care stands today 95% of the children that have gotten specialized care throughout their child-hood will find that it stops at 18.

Doctor Curt Daniels of Ohio State University is participating in a study following children into adulthood that have congenital heart disease. The Nationwide study is reaching out to those that have lost their health care after turning 18. Doctor Daniels and others are trying to find alternative ways to best treat these patients. 

To learn more about these programs click here, Adult congenital heart disease.

Post from: Blisstree

Forgotten Children At 18

Just curious if roller coaster’s are out for all children with congenital heart defects? My son has Hypoplastic Left Heart Syndrome (HLHS) and is getting to the age where he is asking to ride the more adult, scarier rides. Let me know if anyone out there has HLHS or a child with HLHS and share your experience.

Thanks

Rita- Thanks for the question again. Roller coasters… ahhh! I personally find them very scary and the thought of my kids getting on them is even scarier, but for a parent that has a heart defect… I can not even imagine.

Yes, children with Hypoplastic Left Heart Syndrome (HLHS) have many of chronic issues and need to be on many medications and plenty of follow up visits following surgery. I searched and searched… I found a mixed bag of advice. There are many children that are living to live, meaning they ride the rides and do what pleases them. Personally, I think there is some truth to this way of life.

I also found some threads stating that kids with HLHS should not ride roller coasters and thrill seeking rides. I also found some indications of doctors and cardiologists stating that children with HLHS should not take such risks.

There is no strong answer and no definitive right or wrong. My advice is to speak with your cardiologist and follow up with all concerns and worries, as well as worries from your son, and come to a decision that both you and your son can live with. How is he doing? Has he had success? Thanks again for your concerns and your questions, hope you are having a great summer!

Thanks,

Kendra

Post from: Blisstree

Dear Kendra: Hypoplastic left heart syndrome and roller coasters?

What is heterotaxy?  

First, heterotaxy has a prevalence of less then 0.1% but is thought to account for1% of infant mortality.  Heterotaxy is also called asplenia. Asplenia is a heterogeneous disease that primarily affects the asymmetric organs, including the heart, liver, intestines, and spleen. Heterogeneous meaning genetic.  Primarily, this disease includes cyanotic congenital heart disease, asplenia, and intestinal malrotation. Asplenia is thought to have some familial predisposition. Embryologically, it results from failure of development of right-left asymmetry. All thoracic and abdominal organs can be affected but the function of these organs is affected minimally.

Post from: Blisstree

Heterotaxy: Dear Kendra, what is heterotaxy and how does it affect ones body?