living with CHD

When a parent learns the news that their unborn or newborn baby has congenital heart disease (CHD), they’re put into a position they were never expecting to be in. In general, being a parent comes with a lot of emotions, and if your child has a heart condition, these emotions can be amplified.

Anthony and Lacy are the parents of a six-year-old named Josiah who was prenatally diagnosed with hypoplastic left heart syndrome. In this post, they share their wisdom and experience of parenting a child with CHD.

Before Your Child is Born

• Ask questions. If you find out about your child’s heart condition prenatally, it’s essential to have a clear understanding of their exact medical condition. Be sure to ask your cardiologist as many questions as you can to get an all-around understanding of it. “There’s no such thing as a bad question,” says Lacy.
• Understand the financial component. The unfortunate truth about CHD is the surgical and medical costs can be extremely expensive, even in you have health insurance. Make sure you have an understanding of your health insurance coverage and the financial assistance policy your hospital can offer.
• Prepare your other children. If you have other children, take the time to help them understand what’s going on with their baby brother or sister. It’s also a good idea to start creating a plan for where they will go if you need to go to the hospital at a moment’s notice. Lastly, aim to spend one-on-one time with each of your children, as well as time together as a family that isn’t focused on the heart condition.
• Be ready to become an advocate. As you immerse yourself into becoming knowledgeable about your child’s diagnosis, it’s important to understand that you will be their voice until they are old enough to understand their condition on their own.

Once Your Child is Born

• Learning new parenting skills. Having a child with CHD comes with a lot of adjustments to typical baby care. Your baby may have NG tubes or attachments to his or her body, and they may have trouble gaining weight initially. “From learning how to give your baby medication or changing their feeding tube, this new phase in parenting can be difficult, but they’re skills you’ll quickly learn,” says Anthony.
• Protect their immune system. Infants with CHD have weaker immune systems than average babies. If they get sick, they could end up in the hospital for even minor illnesses. Take extra precautions to keep your child healthy, including getting annual shots and informing visitors to keep their hands clean. “Remember, it’s okay to limit visitors or ask visitors to not come over if they have been sick recently, especially during cold and flu season,” says Lacy.
• Take advantage of support. Caring for a child with CHD is a lot of work, but you don’t need to go through with it alone. “It’s okay to ask for help. Ask your family to help you when you need it, and there are so many support groups out there for families,” says Lacy.

As Your Child Grows Up

• Educate teachers and others about the CHD. Sending your child to school is a huge step, as you want your child to avoid getting sick. Be sure to inform the school staff not only about your child’s condition, but their limitations, care instructions, and what to do if an emergency were to happen.
• CHD and physical activity. Your child may have limitations on what kind of physical activity they can participate in. If they do have strict restrictions, encourage them to find a hobby that they can join in. “Our son is very into acting and singing, and we’re happy to support this hobby,” says Anthony.
• When in doubt, go with your gut. “You know your child better than anyone. If you think something is wrong with him/her, contact your cardiologist and get the insight you need,” stresses Lacy.

The Bright Side

While raising a child with CHD has had its challenges, Lacy and Anthony both said they’re incredibly blessed to have Josiah as their son. “The medical field has come such a long way, and research has done amazing things. We wouldn’t have wished for our son to be born with CHD, but he will thrive just like any other child,” Lacy says.

Through Josiah, we’ve learned to cherish everything. Every milestone in his life is celebrated. It can be hard at times, but it can also be rewarding. He lives life through such a different perspective, and it’s great to experience it with him. Your child is strong, and it’s important to let them experience life,” says Anthony.

For more information about Sibley Heart Center Cardiology and our pediatric cardiology specialists, click here.