Congenital Heart Defect Patients Lack Adequate Adult Care

[BraveHeart]

Babies born with serious congenital heart defects are living into adulthood thanks to surgical repairs and other interventions. But after pediatric care ends, these patients lack adequate follow-up care at adult congenital heart disease centers.

Heres the link...
http://include.nurse.com/article/20090323/CRT02/303240020

Hugs,
Mike

[gourleyfam]

I personally do not feel that there is adequate adult congenital heart defect health care offered. At Primary's, there is only one pediatric cardiologist that handles adults. She only does adult cardiology two days a week. We just recently took him to an adult cardiologist, but if he has to have surgery, it will still have to be done at Primary's.

[jljerman]

Thanks Mike for bringing up this important subject.

There are actually 3 physicians involved with the Utah Adult Congenital Heart Clinic. Along with Dr. Angela Yetman, who sees adult patients at Primary Childrens, University of Utah and IMC in Murray, we have Dr. Larry Green and Dr. Kevin Whitehead.

Dr. Green has an adult clinic at Primary Children's as well as the University of Utah Hospital. Dr. Whitehead sees patients at the U of U.

All 3 of these physicians have received advanced training in the area of adult congenital heart disease and echo imaging for congenital defects, and have several years of experience in treating adult patients with congenital heart disease. Our clinic is recognized nationally as a center for care and treatment of adult patients with congenital heart disease.

I know many of you who are involved with IHH are just starting your journey with congenital heart disease and face challenges that are so overwelming that you are just trying to get through today, let alone thinking about 18 to 20 years down the road. But the day will hopefully come for your child when they need someone who can address issues such as family planning, pregnancy and aquired heart disease (yes we have congenital heart survivors who are old enough to have developed coronary artery disease) as well as pacemaker / electrical problems and heart failure that can occur years after the original repair.

We work closely with the physicians at Primarys to care for your children's cardiac issues as they become adults and help to transition then into the world of adulthood and managing the own health issues.

If anyone would like additional information, Please feel free to contact me at 801-585-2337.

Juli Jerman RN
Nurse Coordinator
Utah Adult Congenital Heart Clinic
University of Utah
Division of Cardiology

[BraveHeart]

Juli,

Thanks for your information and input! I'm glad your office works so closely with PCMC. I can only imagine the increase in survival rates that have been made in the last 10 years or 15 years, given relatively new surgical procedures, medical advancements and medicines.

At times dose it seem like the doctors are stretched thin, given the shear number of CHD survivors today...and the anticipated numbers in the near future?

What kind of percent increase would you think your office sees year over year and how are they planning for the huge influx in the number of adult CHD patients they will be seeing...in the very near future?

At what age dose this transitional care take place?

Thanks again for all your office is doing to prepare for our children's future care!:)

Hugs,
Mike