“Tucker is My Hope”
“Some people never get to meet their super hero,” Kimberlee Lewis said. “I gave birth to mine.”
The New Carlisle resident is referring to her eight-month-old son Tucker Lee Lewis, who was born with only half of his heart. Lewis said no sympathy is needed for her family, however, calling these days “happy times” as they learn to celebrate each moment with one another and strive to help other families with similar experiences.
Tucker was born June 16, 2015. “He looked so perfectly healthy and we were immediately in love with this precious baby boy,” said Lewis.
At 18 weeks pregnant, she learned that Tucker had been diagnosed with Hypoplastic Left Heart Syndrome (HLHS), which means that the left side of his heart did not develop. Having just adopted a newborn girl several months prior to the diagnosis, Lewis said that she and her husband Rick “were unsure of what the future held for Tucker and our family.”
Given three daunting options with their diagnosis, the Lewises opted to give their developing son “the best chance at life that we could,” deciding not to terminate the pregnancy or administer comfort care at birth. Instead, they opted for a series of three open heart surgeries that would indeed give Tucker his strongest chance at a productive life.
The little boy had his first open heart surgery at four and a half months of age on November 5, 2015.
“Putting your baby’s life—literally—into the hands of another human being is one of the hardest things I will ever do, but this was our only option at helping him live,” Lewis explained. “Seeing him hooked up to countless numbers of wires and machines is devastating, but knowing that he was alive overcame that sense of fear and hurt.”
After researching HLHS, the Lewises said they were “devastated” to learn about all the diagnosis entailed--developmental and growth delays, tiring easily, inability to participate in athletics, heart failure, extended hospital stays, heart transplant, and more.
“It was so overwhelming,” Lewis said.
Pity and sympathy have never been the family’s desire though, as they possess a very strong confidence in their faith, and they have hundreds of people praying for them as well. Lewis started a Facebook page to share Tucker’s story when she was 25 weeks pregnant, and has since gathered an army of “prayer warriors” as they’re known on social media.
“We simply wanted people to know what a miracle this baby was and to pray with us for him,” she said. “We were--and still are--convinced that God is not finished in his little life and that by no mistake was he here.”
Tucker is now eight months-old and is thriving. Developmentally he is on track and his little smile brightens the room, his mother said.
“Looking at him you would never be able to imagine what all he has had to go through in his short eight months of life,” she said, listing the boy’s many procedures including open heart surgery, countless doctors’ appointments, EKGs, echocardiograms, hospital stays, feedings tubes and other restrictions.
“People often comment to us on how he’s so big and he looks so healthy,” Lewis said. “You know, he’s just truly a miracle in every way, shape and form. He just truly amazes us every day.”
Looking toward the future, Tucker will need another open heart surgery between the ages of two and four as well as multiple heart caths and sedated echo cardiograms. He will have only half of a heart his whole life and will eventually need to have a heart transplant, “but we pray that is years down the road and that medical research can find ways to help these babies before that is needed,” Lewis added.
“We live one day at a time and cherish each moment we spend with both of our babies,” she said.
Because of Tucker’s diagnosis, they aren’t able to go out in public during flu season because even the slightest of common colds could be disastrous.
“We have learned the importance of hanging out together as a family and enjoying the present moment,” she explained.
The Lewis family is determined to spread awareness for Congenital Heart Diseases like HLHS. Congenital Heart Diseases are more common than one might imagine, as one in 100 children are born with them, and they remain the number one killer of children, yet Lewis said research and funding are very limited.
“It is so important for pregnant women to know the signs and symptoms of congenital heart disease, as only one-third of them are caught prenatally, and one-third are not diagnosed until the baby passes away,” said Lewis.
“To parents facing similar challenges and struggles, have hope,” she said.
“Tucker is my hope. He is my proof that miracles do exist and that God has had His hand on his life from the beginning. Get involved,” she urged, adding that she is genuinely thankful for the Facebook groups that allow her to connect to other parents she doesn’t have to face her journey alone. She also expressed her appreciation for local organizations such as Mended Little Hearts of Dayton, an organization she said performs touching actions for the community by building awareness and attempting to find a cure.
“Lastly, don’t be afraid to share your story and ask for people to pray for you. There is power in prayer and God promises that where two or more are gathered together He is there,” she said.
Lewis said she has been involved in the New Carlisle community all her life, noting that her husband moved here in 2010.
“We are so thankful for this community and the support they have given us. It was such an honor to see local businesses with the #teamtucker hashtag during Tucker’s open heart surgery. We are blessed to be a part of this community,” she said.
To join #teamtucker and follow his journey, visit Tucker Lee Lewis’s Heart Journey on Facebook, or visit https://www.facebook.com/Lewisheartwarrior/
