COTA for Samuel's Heart

Our Story

Samuel’s Story

Samuel was born with complex heart defects and has had 3 open-heart surgeries, countless appointments and procedures with cardiologists, dietitians, counselors, pediatricians, therapists and hospital heart teams to support his physical and emotional health as he’s moved three times around the country. Earlier this year his declining energy, increased fatigue, and resistance towards necessary medications led his doctors at Stanford Children’s Hospital to recommend Samuel be placed on the transplant list and wait for the gift of a donor heart to give Samuel the opportunity for a renewed life. 

After three months and three weeks of waiting, Amy was awoken at 6:25 am by a phone call from the transplant team sharing the news that they had a match and his transplant day had arrived. A flurry of phone calls, some quick packing and Samuel, Amy, and Mom were on the road (and Anna was in the air!) with Pop close behind them in under two hours! 

They got to the hospital for almost three hours of check-ups to make sure Samuel was as fit as a boy in the early stages of heart failure can be! With prayers and kisses and the heaviest hopeful hearts, he was sent back to begin the transplant process. 

We were updated every two hours from the operating room; “We want to let you know: he’s knocked out, they’ve made the first incision, he’s on bypass,  the heart is here, the heart is in and is beating beautifully, they’ve closed him up, they’re moving him to the Cardiovascular Intensive Care Unit for monitoring, give us ninety minutes to get him settled and you can go see him.” It was 12+ hours of the most delicate, devastating, and cautious suspense.   

His surgeon came to let us know the transplant went surprisingly smooth and even with his complex and unique cardiac and vascular anatomy she was pleased by the work the team was able to do and that Samuel was handling his new heart wonderfully. 

We are indescribably humbled by the knowledge that Samuel’s new heart came at the cost of a great loss to another family and we will never take for granted that the gift of hope for new days with Samuel means unimaginable loss of the same for the generous loved ones of our donor.

The continued success of Samuel’s transplant and recovery require a few weeks in the CVICU, followed by a few weeks on the other side of the heart floor, and then three months of remaining within 20 minutes from the hospital in the Ronald McDonald House in Palo Alto. Never knew your hankering for a burger and fries could help so many families around the world did you? Go enjoy your next Happy Meal with gusto! 

Samuel has tremendous health insurance but because of the travel expenses for Amy and her support network, as well as 4+ months of cost of living away from home (travel, food, household supplies) and a 4+ month long pause from a job she loves and looks forward to returning to, coupled with the staggering cost of lifelong anti-rejection medications,  therapies, check-ups, and the possibility that this heart may one day fail, we are partnering with COTA to raise money in honor of Samuel to assist with a lifetime of transplant related expenses.

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.