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Congenital Heart Disease: Tips for Parents — From a Parent Who’s Been There

Lainey Havens smiling

Ashley Havens remembers the shock of learning her baby would be born with congenital heart disease (CHD).

“Our minds raced; our hearts dropped,” she says.

At 5 months old, Lainey underwent surgery for two congenital heart defects at UVA Children’s Heart Center. Congenital heart surgeon James Gangemi, MD, successfully repaired her atrial and ventricular septal defects, two holes in the walls between her heart chambers.

Now 5 years old, Lainey is healthy. She and her family have come out on the other side of her health crisis.

What a Mom Learned & Wished She’d Known Sooner

Based on her own experience, Havens shares tips for parents whose baby is born with congenital heart disease.

Overcome the Hardest Part: Fear of the Unknown

“When you live in the dark cloud that hovers over a CHD diagnosis, it’s hard to see anything else,” Havens says.

But you have to fight your fear. “It is easy to get consumed by the overwhelming worry of not knowing how things will work out or what the future will look like. You have to find hope and hold onto it,” she says.

Don’t Face This Alone

“Fear sets in and tries to isolate you,” Havens says. “I wish I would have realized sooner that I was not the first mother to have to go through this with my child (because that’s what it felt like at the time) and that I could learn from other families’ experiences.”

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Know Your Child is Stronger Than You Think

“Lainey’s strength, by far, was the biggest shock,” Havens says. “Her small, fragile body fought so hard and never gave up.”

Lainey’s illness impacted Havens and her husband more than Lainey herself, Havens says. “She never let her pain dull her smile or overpower her day,” she says. “She showed us what true strength looked like.”

Speak Up for Your Child

“No one knows your child the way you do,” Havens says. “My only regret is not figuring that out sooner and speaking up louder for her, not caring what others thought.”

Lean into Your Faith

What helped Havens the most? “My true faith in God and that he placed us with the right doctors at the right time for her,” she says. “Knowing she was in the hands of doctors and nurses and staff that saw her value meant the world to us. She was never just another name on a chart.”

Focus on Good Things, No Matter How Small

“I’ve learned to treasure the small stuff, the average stuff, the everyday-normal stuff,” Havens says. “There is no one grand moment in life, or parenting. All the small moments are what makes our lives grand.”

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