Our son, Jace, was born on May 14, 2014. A few weeks later, I noticed he wasn’t feeling good and decided to take him to the doctor. I thought it was a bug or virus. I had no idea the news we would learn. Our son was born with only half a heart. He was flown to Kosair Children’s in heart failure, and we learned that a heart transplant was our only chance to see our son grow up.
We were under the impression that our heart would come fairly quickly. Once he was on the waiting list, certainly, his life would be saved. But months and months went by, and we learned about the tragedy of the organ shortage. We saw other families lose their child, while waiting for their transplant. We hope that Jace’s story will help END THE WAIT for so many babies and patients in need of a transplant. We hope that everyone will join the Registry to give hope to patients, just like our Jace.
As I hold my son while he naps peacefully today, I remember a heart wrenching day in November 2014. Jace was having a very bad day. The nurse told us the surgeon was coming to see us. We hoped that the news was good. However, he sat and explained in more detail what we had feared. Jace had fought so hard and was tired. His heart just couldn’t keep up. We were losing our boy right before our eyes. These are the words no parent wants to hear. He told us that there was one type of VAD Device they could try, but it had NEVER been done on a single ventricle. It had only been on 3 previous patients with normal heart structure. It was our only hope.
I remember sitting there and crying. I remember thinking about the fact that my baby had worked so hard. Why had he not received his heart yet? So many questions running through my head and no answers. I have said before and will say it again. This experience often made me question my faith, more than anything else in my life. Why make him fight for 6 months just to end that way? I was pleading and praying for God to send my baby a new heart that night.
The surgeon told us the odds of the VAD surgery. There was a bigger chance he wouldnot make it through surgery, than he would. I knew Jace beat the odds with his first open heart surgery and prayed he could do it again. Before surgery on November 19, 2014, Jace was very fragile. He was not having good odds going into surgery, but it was his only option to survive another day.
The surgery took several hours, but when Dr. E came out smiling, I knew we were ok for now. He told us that Jace was a champ. His vitals were already improving. I sat and cried for a very different reason. We don’t know when it will be our time, but I still have my baby today. God has blessed us very much and is good all the time. I can’t believe how big of a miracle we get to call Jace our son. Jace had a very large group of people praying for him. We are thankful for that. Dr E told me that Jace was a true hero and had changed the world for single ventricles. He has made history. They are in the process of publishing the VAD information to try and save other children like Jace. There is no way we can ever thank God and Dr E for getting him through that awful day. The VAD allowed him to survive long enough to receive the news that would save our son’s life.
Just 6 weeks later, the doctor came in to our hospital room and gave us the greatest Christmas Gift one could ever receive. Someone had said “yes” to organ donation, and Jace would receive his lifesaving heart transplant. He was 7 months old. It was Christmas Day.
I often think of the mother that choose to give my baby the gift of life, after losing her own baby. My son has a chance to live his life because his donor family choose to give, in their time of such great loss. He is my miracle baby. They are our heroes.
As I spent the day baking for his first birthday, I think of his donor family who saved his life. I pray that my baby has many more birthdays to come. I also think about all the mommies who I have grown close to that will never get to plan their angel’s birthday party, because their transplant never came. I hope that Jace’s story will educate others about the lifesaving mission of organ donation.
If everyone joined the Organ Donor Registry, more patients would get their second chance at life. Please say “yes” when you renew your license at your Circuit Clerk’s Office. That blue heart on your license shows your support for this mission & gives patients hope.
Everyone can join the Registry – there is no age limit! Medical history doesn’t matter either. If you would be willing a save a life, you can join online today www.donatelifeky.org.
Jace’s half a heart, stole all of mine, the day he was born. We cherish his new heart, every day. He is here today thanks to the miracle of organ donation & transplantation. Please remember to be a hero & Donate Life. Please register. It matters.
-Lacey Riley, Jace’s Mom