It’s amazing how, in a moment, your whole life can change. In a moment you meet the one you love, in a moment you say “I do”, and in a moment you welcome a little baby boy into the world. At 12:15 on a Fall afternoon we welcomed our baby Jason into this world. He was a 7 lb. 11 ounce 21-inch-long bundle of joy, who in the first moments of life peed on his mommy. He had ten fingers and ten toes, and passed all of his newborn tests with flying colors. For the first months of his life we were tired, stressed, and so in love, and only hoped and prayed that we would have a happy and healthy boy to watch grow up. At about 2.5 months old Jason started to show some signs that he was having a hard time eating, he was fussier and we saw that sometimes he would grunt a little bit. We thought it was Reflux or stomach discomfort and so we changed things up and he seemed to be doing better. However, between 4 and 5 months he didn’t gain weight, he was sweating, and he was grunting a lot. We reached out to our pediatrician and got an appointment on his 5-month birthday.

In a moment our lives were turned upside down, a check up at our pediatrician’s office turned into a visit at the nearest pediatric Emergency room, and then an ambulance transport to our local pediatric hospital cardiology department. While in the Hospital Emergency room the Respiratory Therapist deep suctioned our little guy and when Jason’s Oxygen levels didn’t recover very well, we were told “He has to go on high flow oxygen, that’s your ticket to the ICU”. My Mommy heart plummeted.

After an ECHO was done, a cardiologist came in and informed us that our 5-month-old seemingly healthy (with a little reflux) little boy was in congestive heart failure due to Biventricular non- compaction cardiomyopathy (spongy heart muscle). No Mother or Father wants to hear that anything is wrong with their little baby, but as a nurse and a Paramedic-Firefighter as parents the next question asked was “Will he need a heart transplant?”. The cardiologist said it was possible, and that we were going to be admitted to the CVICU.

Jason did really well on IV medication while in the CVICU and we noticed he was happier and had more energy. The ICU team tried to put him on some oral medication to possibly go home, but he started to eat less and would throw up his feeds through his tube in his nose. On Jason’s 6-month birthday he was listed on the heart transplant list as status 1B. Our little guy thrived with the help of IV medication and tube feeding. He was meeting all of his developmental milestones and was a happy little boy in the midst of a pandemic. My husband and I both took a leave of absence from work to be with Jason in the hospital at all times, and we soaked up every minute of it.

We spent a little over two months on the transplant list, and then we got the call that our Jason was gifted a new heart. The road after transplant has been a little rocky, as it sometimes is after a major surgery, but we are so grateful for this gift and expect Jason to do really well going forward. He will have doctor appointments the rest of his life and may know more medical terms than the average kid, but our little boy will hopefully live a full life because of that gift. Any donations to COTA in honor of Jason will assist with a lifetime of transplant-related expenses, including post-transplant. Thank you in advance for your support and donations to COTA for Team Jason.

The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.