Ethan David Osterman was born on February 17, 2012 to his adoring parents, Lauren and Jake — and with a full team of specialists in the room at Children’s Medical Center of Dallas. That is because even before Ethan made his appearance, both Lauren and Jake knew this little boy was going to face an uphill battle to survive. In utero, Ethan was diagnosed with a rare congenital heart defect called Hypoplastic Left Heart Syndrome (HLHS). Also while in utero, Lauren and Jake named their yet unborn baby Ethan because the name means strong, safe and long-lived.
On February 25th at just eight days old, baby Ethan had his first open heart surgery. After this surgery, Ethan was kept on paralyzing medication and monitored while his chest remained open for approximately 48 hours. When he woke, he was given a breathing apparatus and a feeding tube via his tiny nose. For the next several weeks, Ethan had many complications and challenges to overcome, but he did so and his parents soon learned he was a strong, brave and resilient baby boy.
On March 29th, finally out of the hospital and in his own home, Ethan smiled for the first time at Lauren and Jake. It definitely was a sign that Ethan was well-named.
In June 2012, Ethan returned to the hospital for his second heart surgery. Once again, he amazed his medical team and was able to return home one week after the surgery. Ethan was beating the odds. His next hurdle was learning how to eat so his feeding tube could be removed. Ethan had not eaten via mouth since he was born; therefore, he had lost the natural ability to do so. Due to a variety of factors including Ethan’s need to learn to eat, Lauren decided not to return to work and to stay home full time to take care of Ethan.
Over the months that followed, Ethan continued to make developmental strides. He took a family vacation to Florida and he was able to celebrate, and enjoy, his first Halloween. As Lauren remembers, “Life was good!”
However in January 2013, Ethan’s only working heart ventricle began to struggle. He was again admitted to Children’s Medical Center and his team of specialist tried to figure out how to help his heart function more effectively. Additional tests and procedures were performed so his doctor could get a precise idea of what was happening to his heart. Ethan stayed strong, but there was one particular procedure that bothered him. Upon regaining consciousness from the procedure, Ethan was very distressed and suffered a cardiac arrest.
Undoubtedly, Ethan’s heart was growing weaker and weaker. The Ostermans were told Ethan was in heart failure. A heart transplant was his only hope for survival and he was placed on the waiting list. Upon hearing this news, Lauren reached out to the Children’s Organ Transplant Association (COTA) for support and guidance.
COTA uniquely understands that parents who have a child or young adult facing a life-saving transplant have enough to deal with, so COTA’s model shifts the responsibility for fundraising to a community team of volunteers. A COTA fundraising specialist arrived in Dallas in mid-March to meet with a large group of the Osterman’s friends and work colleagues. Under the leadership of Community Coordinator Michelle Snedden, the COTA in honor of Ethan O team (#HeartForceEthan) exploded with fundraising events for transplant-related expenses, and awareness-raising opportunities regarding the shortage of organ donors. While this team of dedicated volunteers started working to organize COTA fundraisers, Lauren and Jake were struggling knowing that Ethan’s health was worsening. Then the unimaginable happened. Ethan contracted a serious virus, which forced his team of doctors to remove him from the transplant-eligible list.
Lauren and Jake remember, “While waiting for a heart, Ethan’s health was so poor he was taken off the transplant list. We made our peace and said ‘goodbye’ to him. Our family members and COTA volunteers began praying for him and Ethan improved enough to be relisted. Within hours of being re-listed (after four months of waiting) we got the call.”
On April 20, 2013, Ethan fought past the worst of the virus enough that his doctors decided to put him back on the transplant list, and eight hours later Ethan was in surgery receiving his new heart. Members of Team #HeartForceEthan were in the waiting room on April 21st when the doctor delivered the news: Ethan’s transplant was a success. According to COTA Community Coordinator Michelle, “We’re not sure if we’ve ever seen so many tears of joy in one room at one time!” In the months that followed, this amazing team of COTA volunteers raised $50,000 for COTA in honor of Ethan; and Lauren and Jake are extremely grateful for all of their efforts and their support.
“When your child is in heart failure and awaiting a transplant, every aspect of life becomes infinitely more difficult. Finding COTA, and starting to work with this amazing organization, eliminated a huge stressor and gave us hope. COTA allowed us to focus on what mattered most … our son’s health,” said Lauren and Jake.
Within days of the COTA for Ethan O team reaching its goal, and Ethan’s post-transplant return home, Lauren posted this message on Ethan’s COTA website homepage:
“First of all, THANK YOU ALL so, so much for everything you’ve done in honor of Ethan. Every contribution, little encouraging comment, favor and prayer have meant the world to us and given us the strength and determination to tackle Ethan’s issues. They have not only made our journey bearable, but made it so rich in friendship and in love. And it is impossible to deny that your many prayers were heard. They were the reason for the happy ending to this chapter in Ethan’s life story, and they are proof that God works miracles.”
The outpouring of support for us has moved us to our cores. It’s unbelievably humbling to hear from people we have never met, from entire communities and from those we haven’t heard from in years. WOW y’all! We knew you wanted to do something to help, but what you’ve done is unbelievable.
And this brings us to Ethan’s unbelievable COTA team. They are extraordinary, selfless people with extraordinary talents. They have taught us so much about the meaning of true friendship and we long for a way to repay them for the countless hours spent on our behalves.
Ethan is doing wonderful these days. We think he might have said his first word today. It was a very profound and exciting word … shoe. We will be sure to keep you posted from time to time about other firsts. As we have said so many times before, we look forward to the day we can tell Ethan about the time when he needed and got a new heart, for which communities around the world rallied in support. Every parent wants their child to be special, and because of you all, we feel that Ethan is exactly that. THANK YOU! THANK YOU! THANK YOU!”
This Valentine’s Day, Ethan will be eating his favorite foods and doing his favorite things, which include playing with trains and running around outdoors. Lauren and Jake will likely be remembering their son’s heart donor angel with love.