CHD Care Doesn’t Have to be Scary: Helping Your Child Cope with Their CHD Care

Congenital heart disease is a lifelong condition, requiring ongoing specialized care. Children with CHD often have clinic appointments, invasive procedures, and long hospital stays to contend with which can often present challenges for parents helping them cope.

Congenital heart disease is a lifelong condition, requiring ongoing specialized care, which can sometimes present a challenge for children with CHD and their families. Thankfully, there are resources available for patients and families to use to support their children throughout their CHD journeys. We are joined by Dr. Peter Wearden of Nemours Children’s Health in Florida and Jenna Read, MS, CCLS, of Nemours Children’s Health in Delaware, as they provide information and guidance about preparing your child for the various aspects of their CHD care, and answer your questions about helping your child cope.


Resources from Conquering CHD:

https://www.conqueringchd.org/learn/children/

Resources from Nemours Children’s Health:

Comfort Holds Quick Reference – https://www.conqueringchd.org/wp-content/uploads/2021/12/J0969_CORP_Nursing_Comfort_Holds_Poster_11x17_FIN.pdf

Congenital Heart Defects (for Parents) – Nemours KidsHealth https://kidshealth.org/en/parents/if-heart-defect.html?ref=search

Heart Health Center (for Parents) – Nemours KidsHealth https://kidshealth.org/en/parents/center/heart-health-center.html?ref=search

Echocardiogram (for Parents) – Nemours KidsHealth https://kidshealth.org/en/parents/echo.html?ref=search

ECG (Electrocardiogram) (for Parents) – Nemours KidsHealth https://kidshealth.org/en/parents/ekg.html

Getting an EKG (Video) (for Kids) – Nemours KidsHealth https://kidshealth.org/en/kids/video-ekg.html?ref=search

Guide for the Caregiver of the Hospitalized Child – https://www.conqueringchd.org/wp-content/uploads/2021/12/J0969_CORP_Nursing_Comfort_Holds_Poster_11x17_FIN.pdf

Cardiac Catheterization (for Parents) – Nemours KidsHealth https://kidshealth.org/en/parents/cardiac-catheter.html

Additional Resources:

Buzzy 4 Shots: Buzzy for Shots…taking the sting out of shots – https://paincarelabs.com/buzzy/

Books for children:

– Matty’s Heart Cath by Jean Clabough (preparation coloring book)

– Nathan’s Special Heart by Jessica Ennis (story about having ASD repaired in cath lab)

– Zip-Line by David Humphreys (story about CHD repair)

– Charlie the Courageous by Joslynn Jarrett-Skelton (story about CHD)

– Understanding Congenital Heart Defects by Doctors for Kids (Comic Book)

– The Beat Goes On by Pritchett and Hull (pacemakers and ICDs)

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