How to Handle Your Baby’s Congenital Heart Defect Diagnosis

When you found out you were pregnant, you may have thought, “It doesn’t matter if I have a boy or a girl as long as my baby is healthy.” Learning that your baby has a congenital heart defect (CHD) must have been a shock. Being a new parent can already be a scary time. Adding a CHD diagnosis adds to your worry and fear. This may be one of the most difficult news you have received in your life. Know that you’re not alone. Every year, about 40,000 babies are born with a CHD.

Below we have some information that we hope can help you and your family cope with your baby’s condition.

My baby has a CHD. Now what do I do?

If your baby was born with a CHD, ask your provider to put you in touch with a care coordinator. This professional can help you understand the next steps in your baby’s care. Here are some other things you can do:

  1. Don’t blame yourself. You may feel like you did something wrong to cause your baby’s CHD. However, there is no known cause of CHD. Talk to your provider about your feelings. Talk to a trained mental health professional or therapist if you are still struggling.
  2. Focus on what’s happening right now instead of worrying about the future. Take a few deep breaths and deal with each day as it comes. If you have other children, be sure to spend time with them. Young children may be scared about having a sick brother or sister.
  3. Learn as much as possible about your baby’s diagnosis and treatment plan. Ask your provider to draw a picture. Don’t be afraid to keep asking questions if there’s anything that you don’t understand. Use a binder or folder to keep all the information you’ve received about your child’s diagnosis in one place so you can find it easily.
  4. Take care of yourself by continuing to visit your provider for postpartum check-ups. Try to eat well, find time to do something active, and get enough rest. It’s hard to think clearly when you’re tired or stressed out. Give your mind a break by enjoying a hobby or finding a new one. Reading, knitting, watching a movie, or drawing can help calm your mind. Research shows that even 10 minutes of rest, exercise, or quiet time can help.
  5. Write about your feelings. Try recording them in a journal. Make a list of things you are grateful for, like your health, the weather, or a good friend. Gratitude helps you think positively. Another option is to write your worries on a piece of paper. Then, place the paper in a sealed jar or box to mentally release those fears from your mind.
  6. Ask for help—and let people help you. It may be hard to ask for help, but your family and friends want to help you during this stressful time. Make a list of things that need to be done. If someone asks what they can do, give them a task from your list.
  7. Ask about the services provided by your hospital’s social workers, child life services, pastoral care department, or patient navigators. Ask about support groups to connect with other parents of children with a CHD.

Dealing with so many medical bills and expenses

Treating a heart defect can be expensive. You and your family may be feeling very overwhelmed with all the new expenses and the extra out-of-pocket medical costs. This can create financial problems that affect your family’s everyday life. Here are some tips:

  • Face your financial situation head on to feel more in control. Talk to a financial consultant. Sometimes there are ways to save money that you may not have considered. Keep track of all bills for you and your baby. You can call the billing department to set up a payment plan for large bills. Even paying a little each month is better than not paying anything.
  • Call your insurance company to explain your situation. Ask for a review of your plan, including the deductible, maximum out-of-pocket expenses, any health savings or flexible spending accounts you have, how to find in-network providers for your baby, and any limitations on coverage related to your baby’s specific diagnosis. If you don’t have insurance, visit the Healthcare Marketplace.
  • Ask about the family leave benefits at your job if you are working. Find out if your employer has a donated leave policy and if you can use donated leave to get more time off. Also, ask about remote or part-time work options.
  • Take good notes. Write down the names, confirmation numbers, authorization numbers, dates, and details of every call.
  • Every state offers Medicaid to help families who meet certain conditions pay for medical expenses. You or your child also may qualify for disability payments called supplemental security income (SSI). Ask your provider or case manager for information about these programs.

Is it safe to have another baby?

We don’t know the cause of most congenital heart defects. The chance of having another child with a CHD depends on many factors. Meet with your provider and a genetic counselor who can better assess your risk. Your provider can talk to you about your interconception health. Interconception health involves being healthy between pregnancies and waiting at least 18 months before becoming pregnant again to help reduce the risk of birth defects.

While this may be a stressful time, many CHD parents say their lives have changed for the better in some ways. They have learned to appreciate the “little things in life”.

Visit marchofdimes.org to learn more about CHDs.

Resources:

American Heart Association CHD Resources

American Heart Association Online Support Group

Children’s Heart Foundation

Conquering CHD

Little Mended Hearts

Mended Little Heart Guide

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