Our journey with organ donation began when my daughter, Story, was seven months old and was in severe heart failure. The words that she “needed a heart transplant” brought me to my knees.
My daughter was diagnosed prenatally with a severe congenital heart defect (CHD) known as Hypoplastic Left Heart Syndrome, and an unbalanced AV septal defect. We had to go out of state to deliver her so she could receive the proper care when she was born. She was born on October 28, 2013. I was able to hold her for a few seconds before she was whisked away to the NICU. After a few hours she was taken to the children’s hospital where she was admitted to the CTICU. At just a few days old she had her first heart surgery.
She did well with her first surgery. She did however have difficulty with feeding, but started to eat some by mouth. We were discharged a few weeks later. We were nervous, but very excited! We were sent home with a pulse ox, a scale, a notebook to document her weight, her oxygen levels, and her heart rate. We had biweekly cardiology appointments.
The next several months we were in and out of the hospital for various issues. She had her second heart surgery when she was five months old. She did very well, but struggled coming off oxygen, but was eventually able to be weaned from it. We were discharged a couple of weeks later. She had a hard time with feeding, so she came back home with an NG tube. We were so excited to be home and we thought that she wouldn’t need another heart surgery until she was a few years old. But about a month and half of being home, we were at a follow up cardiology appointment where we found out that she was in severe heart failure, and she would have to be airlifted back to her hospital in Columbus, OH.
When we arrived they started her on an IV medicine called, Milrinone. They also observed her, and did a heart cath. They said that her heart has just gotten worse over the months, and you can see it in her echos. After a lot of discussion the doctors said a heart transplant would be the onl
y option. She was listed for a heart transplant on July 3, 2014. Story had only been on the list for 6 weeks and 3 days when she received her new heart!
It was such a roller coaster of emotions. You are so over joyed your little one is getting a second chance at life, but you are overcome with grief for the donor
family. The love that they had to say yes to organ donation in the midst of their suffering and grief, will forever be with me. They changed our lives that day. Story just celebrated her fourth birthday this past October. She is not only surviving, she is thriving! She has so much energy, and has pink little toes, and fingers! Organ donation gave her a second chance at life, and every time I look at her new heart beating away during her echo cardiogram, my heart overflows with thankfulness for the donor family.