Caring for a medically fragile child with a heart condition can create added stress, worry, and can take an emotional toll on the entire family. In general, caring for a child with any life-long or life-altering medical condition can be a unique journey.
We are here to provide solutions.
View four important tips from The Unforgotten Families below on how to care for a medically fragile child with a heart condition.
Join a Support Group
When you join a support group, you have a community of parents, friends, and partners to turn to for emotional support and so much more. Being part of a support group can make caring for a medically fragile child with a heart condition less stressful. Resources often discussed in support groups are:
- Financial assistance
- Educational resources
- Emotional support
- A platform to raise awareness
The Unforgotten Families is a community of support and is always looking to support additional families through advocacy work, media opportunities, and more. Learn how our organization can help support your family.
Take Care of Yourself First
You hear it all the time, but it’s true – you cannot take care of others unless you care for yourself first. As a parent of a medically fragile child with a heart condition, oftentimes your daily routine is centered around caring for your child, attending doctor appointments, and staying on schedule.
It’s important to pencil in YOU time. This may look different for everyone. Whether this is watching television after the kids go to bed or scheduling a massage – YOU time is necessary.
Get Proper Coverage
In a recent article by the University of Michigan, if your child is living with a heart defect, they may qualify for public health insurance programs or financial assistance from organizations built to help families like yours succeed.
“These programs vary depending on the state in which you live, but they may include Medicaid, Title V, or the Children with Special Health Care Needs (CSHCN) program.” – University of Michigan
Feed More Frequently In Smaller Increments
Children with a heart condition generally get tired more quickly than other infants when breast feeding. It’s important to recognize this and adjust feeding times and increments to ensure your child receives the same quantity of nutrients.
According to Familydoctor.org, your baby with a heart condition may have difficulty feeding and require a lactation specialist.
The International Lactation Consultant Association represents more than 6,000 members in 85 countries would be an amazing resource if looking for a specialist or educational materials.
Follow along with The Unforgotten Families on social media for more helpful information to caring for a medically fragile child. #TUF #TheUnforgottenFamilies