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Tell Your Story, pediatric heart condition

When a child has a heart condition, the family might feel like they’re facing the impossible. If you’ve been there, what would you say to encourage another family who has just found out their child has a heart condition?

Share your thoughts in the comments below:

Barb Roessner

Hi, I'm Barb, and I'm a Physician Assistant and coordinator of the Heart Failure and Transplant Program at Children's Hospital & Medical Center in Omaha. I work with patients and families at every step of the journey, from diagnosing their child's heart condition to my favorite part—calling them to say "We have a heart."

4 Responses to "TELL YOUR STORY"

  1. Caitlin McEntaffer

    February 17, 2015 at 10:28 am

    As being the heart patient within my family, I depend on the support from my family and friends. I reached out to other families with children with similar conditions I have. Having the loving, supporting family around the patient can easily help boost the morale of the patient.

  2. Mandy

    September 7, 2016 at 10:01 am

    I was born with Tetrology of Fallot. It consist of four defects of the heart, causing my valves to leak and my aorta enlarged. Also my arteries are very small. At birth in ’81, the doctors were unsure how to fix me. I received open heart at 1 month. They placed a shunt in my heart to temporarily fix my heart. At 10, I received stints in my arteries. I now have six to open up my arteries. Then at 25, I had another open heart to replace my mitral valve. At 30, my heart went into v-tach, causing me to receive an icd. (Happy 30th to me). Depressed then, but happy now that it has saved me twice so far. I’m now getting prepared for my next surgery. I will be getting a newer model mitral valve.
    I would love to give advice to anyone. I believe that I’m meant to help someone. I hope that my story helps someone. There is always hope and the power of prayer.

  3. Elisha Gardner

    November 29, 2016 at 4:08 am

    I am a single mother of 4 and last month was diagnosed with cervical cancer and liver failure. I’m working for as long as possible to ensure my December bills are paid but my doctor has told me I will definitely be spending Christmas in the hospital. Weeks. I could really use help with Christmas gifts for my babies. I don’t want them to hurt anymore than they are. I have no family and few friends. It’s just me and my loves. I don’t know how much stronger I will be for much longer but I’m trying to handle all of this before I can’t. Last year we were in a position to adopt two family’s. I pray very hard the God will put it on someone’s heart to help us this year. My late son was a chd baby and since losing him our holiday haven’t been the same. I hate that my children have to go without their only parent on Christmas also.I have made a wish list on Amazon. I don’t accept anyone to buy the entire list but if we came together as a group my prays is that we can each give a little. I believe God has an answer for my prays. Thank you and godbless!

  4. Ernesto Bernal

    January 24, 2017 at 6:39 pm

    My son is 30 yrs old. To me, he is still my baby. He had a heart attack, a stroke and he got heart failure. He had to get a LVAD pump on the left side of his heart because it wasn’t beating right, it was really weak. He would have passed away within a month without the pump. He is in a lot of pain trying to recover, but these machines aren’t guaranteed for more than 7 yrs. He’s such a big bear, he always seems to make jokes and smile through this nightmare. I can’t go on. Sorry, excuse me.


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