What a New Heart Parent Needs From YOU!

My baby, Izabel, was 24 hours old when she was diagnosed with a heart condition and transported to a completely different hospital from me and her twin sister.

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Izabel’s Room at Children’s Hospital of Michigan, Detroit on her car seat challenge and homecoming day! January 22, 2018

The time after her birth and diagnosis was a confusing and painful experience for our family. During her stay in the NICU and the few months to follow, our family and friends offered us support, love, and advice. Izabel is a year now, and thriving!

For Congenital Heart Disease Month, I put together a list of ways you can help a new parent when their child is diagnosed.

  • Allow the new heart parents to ride the waves of emotions. A diagnosis like this can evoke feelings of guilt, anger, and fear for the future. Do not say “it could be worse”. The gravity of that statement will do more harm than help. As heart warrior parents, our child’s doctor already filled us with the worst case scenarios and we know we are “lucky” it’s not “worse”. We know we are lucky that our baby is here with us. However, that does not take away the pain and shock of our child being diagnosed with a heart condition.
  • When you ask for updates, accept the update given. Too many questions can feel overwhelming to new heart parents.

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    Mid-Michigan Mom’s Contributor Annelies Kinzie’s son after his open-heart surgery
  • Personally, I had one twin at home, and one in the hospital. I would be up half the night at home with one baby and start receiving messages at 6:30 or sooner in the morning from family or friends asking me how my heart baby’s night was. This made me feel like an awful mom because I hadn’t even called the hospital to check on her yet. My advice here would be to remember that mom just delivered a baby. She is tired, stressed, and sad. Allow her to be a new mom and encourage her to rest when she can.
  • Offer help, but do not be pushy. If you feel like you need to help, despite your offers going unanswered or denied, then do something deliverable: send food, a nice card, gift cards to hospital area restaurants, gas cards, or simply a text just to say “I’m thinking of you”.
  • If you are sick, or sniffly, or have a nagging cough, keep your distance. The hospital staff put the fear of God in the new heart parents about illnesses and CHD babies. If our tiny warrior catches your little cold, it could turn deadly for them.

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    Izabel with Mommy and Daddy right before her Cardiac Heart Catheterization
  • Give the parents time to adjust. CHD’s are not curable. The heart can grow and improve, but the child will always have a CHD. This is a lot for a parent to absorb.
  • Babies cry. Babies spit up. Babies breathe oddly sometimes. Babies cough. These are normal occurrences. However, a parent of a CHD baby might be hypersensitive when these things happen. Offer some support and understanding here. Mom is not being overprotective, she is worried. On day two of being home with my heart baby, she spit up her entire bottle. My mother-in-law was over. Instead of leaving for home when she planned, she sat with me while I panicked and waited with me until my husband got home from work. She didn’t pick on me for being concerned. She didn’t tell me it was fine. She helped me watch for other signs and didn’t leave me.

    Mid-Michigan Mom’s Contributor, Christina Wiggins’ daughter, Audrey
  • Don’t sell yourself short by saying “I don’t know how you are handling all of this” to the new heart parents. If you have children, you know. You know that no matter what happens, you will love and fight for your child(ren): one day, one minute, one second at a time!
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Izabel with her Mommy at her cardiology follow up

Are you a heart warrior’s parent? Share what you think support people can offer to new heart parents.

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