My husband, Tommy, and I were thrilled when Jack was born eight pounds and three ounces in early November. But as we were being discharged from an Ohio hospital two days later, I sensed there was something wrong. I was right. Jack never left the hospital that day. It was three weeks later that we were told Jack had Loeys-Dietz, a connective tissue disorder characterized by aortic aneurysms-weakening the main artery in the body. They told us Jack’s condition was terminal. We were advised to take Jack home with Hospice.
As a mother, I want people to know a little about my firstborn son, Jack. While he only lived 81 days in this world, he had a tremendous impact on so many people. I’m sharing Jack’s journey in the hopes it brings strength to other parents in difficult times.
We went home. It was gut wrenching to think we could do nothing but watch our baby die. So instead, we reached out to the genetics team at the hospital and asked for help. They referred us to a physician at Johns Hopkins University-the physician for whom the condition is named. That physician recommended we talk with Dr. Luca Vricella at Advocate Children’s Hospital. Dr. Vricella was one of only a couple of cardiovascular surgeons in the nation who might be able to help.
Jack was life-flighted from Akron to Chicago. After two commercial flight delays, Tommy and I nervously followed. We met Dr. Vricella on Sunday morning. He was so kind and genuinely caring. He would do surgery to try and repair the aneurysm, but we knew there were no promises. He told us Jack’s condition was extremely serious, and we would need to take one day at a time.
Jack got through the surgery over the Christmas holidays, and we took him home to Ohio. In the month that followed, Jack met his puppies, his loving grandparents and spent time held tightly in my arms smiling. He loved being held.
In those few weeks, he seemed like a normal, happy baby, and we had so much fun loving him. We were doing it, as advised, taking it one day at a time.
We knew Jack would be a fighter-Tommy and I are both strong. But one day in January, his little heart couldn’t fight any longer. We lost our son.
I am so proud of the choices we made to give Jack every possible chance to live. It has been easier to accept Jack’s death just knowing that we took him to the ‘best of the best’ for care. We are so grateful to Dr. Vricella for giving us those additional days-those additional memories of Jack. In Dr. Vricella, we found not only a good doctor, but a good person. It made such a difference.
Today, our lives are changed forever. The joy Jack brought us will never be forgotten. I try to be positive and focus on my faith, knowing I will see Jack again one day.
The moment I got pregnant, my ‘momma bear’ protect-my-baby instincts kicked in. While I couldn’t protect Jack from the dreadful condition that took his life, I know that we did the very best we could. There is great comfort in that.