How to Support the Parent of a Heart Warrior

When you’re expecting a baby, you do everything you can to prepare for your new little arrival — plan a nursery, stock up on supplies, pick a name. 

Open-heart surgery is probably something you could never imagine.  But for the tens of thousands of babies born with congenital heart disease every year, it quickly becomes a possibility.

The CDC estimates that almost 1 percent of babies in the U.S. are born with a congenital heart defect (CHD), and of those, about 1 in 4 has a critical CHD that will require surgery within the first year of life. 

Life with a newborn is both challenging and rewarding, and we know how to support our friends who are new moms: Bring over dinner. Offer to wash the dishes. Keep an eye on things so she can take a shower or a nap. 

Life with a baby who has CHD is challenging in entirely different ways, and you may not know how to help — or want to bother your friend by asking them for ideas. We reached out to some “heart warrior” moms to learn what kinds of gifts and support they have most appreciated while caring for their little ones. 

Dominique Barnes’ little boy, Phoenix, was born with several complex CHDs and spent most of the first year of his life in the ICU at Texas Children’s Hospital. (You can follow their journey on Instagram: @phoenix_thefighter.) Dominique spent that time right by his side.

“When you spend so much time in a hospital, you learn to create a new ‘normal’ and figure out how to make yourself most comfortable,” Dominique says. 

She helped make her time in the hospital more pleasant with items like her own pillow and blanket and a plug-in heating pad. If you’re looking for gift ideas for parents staying in the hospital, she recommends some of the little comforts of home:

  • Fragrant body wash, lotion, shampoo and conditioner
  • Plush towels
  • Coffee creamer, tea bags, or a mug
  • A small container of laundry detergent

Parents of heart warriors spend long hours in the hospital, so Dominique also suggests gifts that help pass the time pleasantly:

  • Books and reading material (especially ones that are happy, funny or positive)
  • Comfortable slippers
  • Loungewear (leggings, sweatpants, hoodies — the hospital gets cold!)

After a steady diet of hospital food, Michelle Carino Durkos grew to appreciate an unexpected luxury while she stayed in the hospital with her daughter Francesca, who underwent open-heart surgery to remove a massive tumor when she was an infant.

“It was wonderful when family members sent fruit baskets/Edible Arrangements,” Michelle says. “Fruit is great when you’re in the hospital.”

Your gifts don’t have to be material, either. A simple call, text or card can make a huge difference.

“It helped to have friends reach out every day,” Michelle said. “It helped me feel supported and loved.”

You don’t even need to know a little heart warrior to help one! This month, Ruggish is supporting Mended Little Hearts, a nonprofit that provides resources, support and outreach to families of children with congenital heart disease. We’re grateful for their work offering hope to young CHD patients and their loved ones.

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