The Roadmap to Success For Complex CHD Survivors

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Dr. Gil Wernovsky

What an honor and a pleasure it was to talk with Dr. Gil Wernovsky about his vision for the future of pediatric cardiology related to care of those with critical congenital heart defects! He has kindly given us copies of some articles that he mentioned in his podcast.

Dr. Wernovsky’s article is entitled, “Creating a lesion-specific “roadmap” for ambulatory care following surgery for complex congenital cardiac disease” and is authored by him, Heart Mom Stacey Lihn and Melissa Olen (a nurse who worked with Dr. Wernovsky). I love how he collaborated with people from all aspects of the CHD community to come up with this concept and I’m hoping it’s an idea that will catch the CHD world by storm! This is exactly what we need to reduce the stress that many of us Heart Parents feel regarding the treatment of our Heart Warriors (HW). It really is time for us to know what kinds of tests we can expect our HWs need to have and for anticipatory screening to be done, and baselines established so we catch any “consequences” of having a funky heart.

Dr. Wernovsky talked about an article by Brad Marino, M.D. et. al. entitled, “Neurodevelopmental Outcomes in Children with Congenital Heart Disease: Evaluation and Management” which is available free of charge online. This article speaks to the neurological consequences of having a congenital heart defect.

It amazes me how Dr. Wernovsky keeps track of all of the articles he’s written considering how prolific he is! I asked him if he remembered an article that was a retrospective study conducted in the 1990s and he did! This article is entitled, “Inattention, Hyperactivity, and School Performance in a Population of School-Age Children with Complex Congenital Heart Disease” and it is also available free of charge at the given link. This article was actually published in 2008 but I think it provided some important information.

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The last bit of news I am excited to share is about the Baby Blue Sound Collective. One of the most amazing things to me about this group is that the songs are written by doctors, performed by doctors, nurses, techs, and even some parents of Heart Warriors.

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Dr. Gil Wernovsky at the piano

Dr. Wernovsky even gave Heart to Heart with Anna the right to use one of the songs from the album for the podcast! So now Heart to Heart with Anna has a funky new sound! Let us know what you think about it.

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Some of the members of the Baby Blue Sound Collective

If you purchase their new CD, “Home. Tonight. Forever” the proceeds will go to The Children’s Heart Foundation which is a nonprofit organization whose sole mission is to provide funds for research related to congenital heart defects. They recently joined forces with the American Heart Association and funded more than a million dollars worth of research. What they’ve done is nothing short of miraculous since all of that was inspired by the life of one little boy named Sam. I love how the CHD community has pulled together to make music and fund research all with the hope of improving the lives of those affected by congenital heart defects.

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