Mended Little Hearts Open Forum

Hello, 
My son has HRHS with pulmonary atresia and some other complex issues with coronary arteries. He's had 2 OHS operations, the last being in 2013 for the Fontan surgery. He is currently in 2nd grade and struggling with reading and math. I have read articles on CHD kids having issues with learning disabilities when they get to school age. I was wondering if anyone else has these issues and what you did with the school, pediatrician, and cardiology to help your kiddo get the help they needed? I just hate watching him struggle so much in school. 

Thank you in advance.

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Lauren Mulvenna
Saint Charles MO

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Hi, 

There is a lot of research and data that shows neurodevelopmental issues with children who have CHD. My son is 8 (almost 9) and also has Down syndrome. So, I realize that's much different, but the process is kind of the same. 

Ask your school to evaluate him for any areas of struggle. If you request a full evaluation for an IEP (Individualized Education Plan) they must comply and evaluate him (It's Federal law). They should have him evaluated for speech, OT, PT, and things like reading, etc. They will also have the school pysch evaluate him for delays in social or development that may be obvious. 

From that you can design an IEP plan for him that can give him the extra help that he needs (maybe more help in reading, etc) to help him achieve his goals! 

As far as ideas: Dolce sight words are a great way to make sure that he has the basics down (You can google them and get them online for free) and math progras like Touch Math can help him. These ideas aren't going to fix the issue, but they are tools that maybe you can help him understand. I know that executive function seems to be a big problem with CHD kids and that can be helped with some adaptions at school, like a schedule printed, a calendar schedule (once older) and sometimes things like check lists (do you have all you need to take home?). 

There are really SO MANY things that can help. If you have specific areas that he is struggling with and need ideas let me know. I'm always happy to share my resources. I have a son who is 12 with Autism and my 8 yr old with Down syndrome and a CHD. So my resource tool box is pretty big. LOL

Good luck!

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Andrea Baer
Director of Patient Advocacy
Mended Hearts/Mended Little Hearts
Grapeville PA
7243967820
Director of Patient Advocacy
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My daughter has Pulmonary Atresia (PAIVS) and is an HRHS kiddo.  She also is in the 2nd grade and had her Fontan in April 2013.  She attends Boston Public Schools and has an IEP.  While she currently is not showing signs of having any learning issues, I do have the IEP in place so that we can monitor her closely given that many of these kiddos can develop learning disabilities well after their last surgery, and sometimes even years after having no performance issues in school.  Here in Boston, we are very lucky to have access to the Cardiac Neurodevelopment Program at Children's Hospital and Dr. Janice Ware.  Beyond the support we get from Boston Public Schools -- we have access to Dr. Ware's program and the research she is conducting to better assess when our kids start to show signs of having leanring disabilites or trouble with executive function.  She has amazing evaluation tools and assessments that help you identify what potentially is going on for your child.  Hopefully being in touch with her can help. -- Molly

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Molly Foley
South Boston MA
(617) 794-0574
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