Parenting Advice for Raising a Child With Congenital Heart Condition

When Brittany and Walt Hammond got married, they said they would sit down to dinner as a family, and pray over their food. Two toddlers and two open-heart surgeries later, the tradition remains intact.

Deacon Hammond of Bryan, TX, may have half a heart, but he is whole in mind and spirit, if not body. Diagnosed in-utero with Hypoplastic Left Heart Syndrome (HLHS) a rare congenital heart condition, Deacon is a happy and very busy toddler, even after two major surgeries, and a third on the horizon.

With little certainty about the course of their son’s lifelong health journey, Deacon’s parents, Brittany and Walt, wish for their son to be “a testimony of strength and spirit to the world.” So they decided, upon diagnosis, to try to never take a moment for granted. And to help Deacon live life to the fullest.

Parenting a child with a congenital heart defect is a mix of joy and challenge; as it is with every little one. Here, Deacon’s mom and dad offer 10 tips for taking care of “heart kid,” and for taking care of themselves, too:

1. Don’t Hold Back

“We found out about Deacon’s heart defect when I was 20 weeks pregnant. There was so much unknown, and it was terrifying. But even before he was born, we decided we were not going to hold back on his life. We did not want to hold Deacon in a bubble. So instead of us setting strict limitations for what Deacon can do, we are watching and letting him set his own physical limits. We think this is helping him live a normal life.”

2. Embrace Life

“The data show that Deacon might not live that long … into his late 20s or early 30s, as of right now. But we can’t know, with technology changing so fast, and the surgeries he has had were not around before. We don’t know the future, but I would say, ‘Let your kid live, and do as much as he possibly can with his life.'”

3. Don’t Live in Fear

“If you’re constantly worried about all the things that can happen, your child is going to be a worrier. We don’t want to do that to our son. We don’t want him to live in fear. So that is what we’re trying to do … to not live in fear.”

4. Help Siblings Process

“Our daughter, Olivia, was 2½ when Deacon was born. She lived with her grandparents for 3 months, so we could be at the hospital. All four grandparents, and my sister-in-law, were a huge support. But this is still really hard on siblings. Today, when we ask Olivia to show what her brother’s heart look like, she makes a heart shape with both hands, then takes one hand away. This is a way of helping her process. There is also a really great book called, “Charlie the Courageous.” It talks about a little girl with a heart condition, and how her zipper scar makes her special.”

5. Laugh a Little

“We have found that you have to look for humor in what is happening. People think we are crazy to laugh about stuff we have gone through, but you have to find the humor in the nitty-gritty.”

6. Support Your Spouse

“When you are stressed and scared, the person you are going to take it out on the most is your spouse. But that is the person who is also going to fight alongside you, who will get down in the dirt next to you to make sure everything possible is done for your child. That’s important to remember.”

7. Tend to Your Marriage

“Take the time to go to dinner by yourself. Get away from the hospital. Don’t eat hospital food every day. Don’t sleep in the hospital room every day. You really have to make time to get away … even if for one night. Get away from all the noises and the beeping and nurses coming every 20 minutes. You need some time alone. You don’t want to resent each other because you are feeling neglected.”

8. Trust in the Lord

“Those are easy words for some people to say, until they go through something huge. But looking at how well our child is doing, living with a serious heart defect, I know God has had a hand in it.”

9. Find a Mentor

“I was very grateful to have a mentor of a heart mom. Friends of our our connected us to another couple who have a daughter who is a heart child. She is doing great. It has been a tremendous support to have their insight and guidance.”

10. Look for Peace and Wisdom; It’s There

“HLHS is a burden, and not a burden. We wouldn’t wish it on anybody, but it has grown us in a way that we can’t understand. I never understood that overwhelming peace that people talk about when they are going through very challenging times. It is so hard to describe, but you do get this sense of peace and wisdom. Until you live it, you don’t know.”

Please Share Your Tips for Parenting a Child with a Congenital Heart Condition

We’d love to find out how you have parented a child with a congenital heart condition. You can tell us (and CaringBridge users everywhere) about any tips and techniques you’ve used successfully and what advice you’d give to other parents. Comment with your ideas and stories below.