My son Jacob was born with Hypoplastic Left Heart Syndrome (HLHS). He had 3 open heart surgeries by the time he was 3. We knew before he was even born that he would need a transplant someday. We hoped he would be much older before he needed one. In April 2015, he got Influenza B, and it was too much for his heart. He was placed on the heart transplant list on May 21, 2015. On June 6, 2015, we received the call that they had a heart for Jacob.
He was only listed for 16 days. It was terrifying and exciting all at the same time. We had 4 hours to get to Salt Lake City. Jacob was so scared and nervous. My heart ached for him. I wished with all my heart that I could do this for him. His surgery was set for the next day, June 7, 2015, at 7 a.m.
I have copied a few excerpts from my journal that I kept through this journey. These thoughts honestly convey everything that myself, Jacob’s dad, and his sister were feeling and thinking.
May 26, 2015 (Pre-Transplant)
Jacob is starting to feel better about getting a new heart. We've had some hard conversations these past couple of weeks. How do you help a 12-year-old understand that he is going to die if he doesn’t get a new heart? I’m not sure I understand this completely. He has had to fight to survive all his life, even being brought back to life at 3 months old due to heart failure. This is nothing new for him. Not once in the past 12 years has he ever asked, "why can't I be normal?" The past couple of weeks he has asked me this over and over. It breaks my heart. He just wants to run and play with his friends again. I know Heavenly Father has great things in store for him. His life isn't over yet. I know he is surrounded and protected by angels.
June 8, 2015 (Post-Transplant)
What an amazing and overwhelming day. I am so grateful for all the miracles that took place over the past 24 hours. Even though I have seen Jacob after 3 open heart surgeries, it was still very overwhelming to me to see so much hooked up to him. For the first time today, I cried. I cried from relief, I cried from nerves, and everything in between. I cried for the new heart I see beating in his chest - a heart that belonged to someone else not 24 hours ago. I am grateful I get to go to sleep tonight and wake up tomorrow and still have Jacob. Someone is going to bed tonight without their loved one. We will be forever grateful to this wonderful family who gave Jacob a second chance at life. Words cannot express my feelings. I am grateful for my Heavenly Father, because without him, this wouldn't be possible. His little toes look so perfect and pink not gray or black.
June 9, 2015
Jacob is doing well. They removed the breathing tube today. He asked me if his surgery was over. I said yes, and he started to cry.
June 12, 2015
A nurse told me today that he was one of the sickest kids on the transplant list. They keep telling me how bad his heart was, he would not have lived much longer. Jacob was only on the transplant list for 16 days. I'm so grateful for the donor family for giving us the gift of life. We have to have faith in the Lord's timing and it is not always easy. He knows what He is doing.
It’s been almost 9 months since Jacobs’s transplant. I thank my Father in Heaven every day for our donor and their family. I pray they have found peace and comfort knowing they helped save a life of another child, even when they couldn’t save their own. I hope that someday we will be able to meet them and they will be able to hear and feel their loved one's heart beating strong in Jacobs chest, giving him life. Our donor family is a part of our family now.
I was 30 years old when I had Jacob, and before that I can honestly say I had never even thought about organ donation. Now I think about it every day of my life. With our experience we have been able to educate our friends and families about organ donation. We’ve had entire families all sign up to donate their organs. Organ donation is one of the greatest gifts you can give to anyone.
Brian, Nicole, Kelsey and Jacob