A LIFE'S PURPOSE

Family grief turns into a passion for giving back

Written by Miriam Sauls
Photography by John Hansen

Taylor and Melissa Blanton had been married less than a year when they found out they were pregnant. Delighted with the news, they had the usual conversations about whether they would find out if it was a boy or a girl (it was a boy!) and what they might name the baby (they settled on Luke Michael).

Little did the Blantons know that soon their conversations would turn to topics much more difficult and serious, and eventually their baby boy’s journey would inspire much-needed improvements to a special room dedicated to parents with seriously ill babies at Duke Children’s.

After a routine ultrasound a few months into the Blanton’s pregnancy, the Durham, North Carolina, couple had to hear what no young couple wants to hear. The baby had severe heart abnormalities. His enlarged heart meant there was not enough room for the lungs to develop.

“The diagnosis was devastating,” says Melissa. “It was our first pregnancy and the first grandchild on either side of the family. We were shattered.”

In a communication with friends and family they wrote, “While we don’t know what the future holds, we strongly believe that as long as Luke has a pulse, he has a purpose, and we will do everything in our power to help him achieve that purpose.”

In early September 2017, a couple of months before their due date, Melissa and Taylor met with their Duke pediatric cardiologist, Piers Barker, MD. He had sent Luke’s information to medical schools and children’s hospitals across the country.

“None of them had seen a heart quite like Luke’s,” says Taylor. Their hope was that Luke could receive a heart transplant if his lungs were functional, but they knew that was unlikely.

Luke was born on November 16, 2017, and after several failed attempts over 31 days for him to breath on his own, Luke passed away. Taylor shared the heart-wrenching news with family and friends, writing: “Luke Michael Blanton is now at peace. He went to be with his Heavenly Father while being held by his mother, comforted by his father, and surrounded by his grandparents and aunts and uncles. His final moments were calm and peaceful. We will honor Luke's miraculous 31 days of life.”

Taylor and Melissa began thinking of ways they could both honor Luke and the Intensive Care Nursery (ICN) doctors, nurses, and staff they had grown to love and also support future parents going through similar hardships.

It wasn't long after Luke passed away that the Blantons reached out to Sarah Haithcock, nurse manager, and others in the ICN and politely thanked them for the Care by Parent room, a multipurpose room where parents can stay with their child and where Taylor and Melissa spent time holding Luke and grieving during his final hours. “But the room left a lot to be desired, and they wanted to fundraise to make it better for other families that were in their situation,” recalls Haithcock. “They had very clear ideas of what they wanted, which made it easy for us.”

“We had received feedback from other parents that the room needed improvements, but we never had the means to do it,” says Emily Malcolm, director of the ICN Family Support Program. “The Blantons noted how noisy it was, that the lighting was too bright, that the furniture was not conducive to being able to sit together, that the atmosphere was anything but homey.” They suggested remedies, which led to the new design.

To begin fundraising, the Blantons contacted their network of friends, family, and colleagues who had supported them through Luke’s journey and explained their intention to remodel one of the Care by Parent rooms in the ICN and rename it Luke's Room.

They set up a fundraising website, and $35,000 and 18 months later, the space was transformed. The room was officially dedicated during a ceremony on October 7. “Just knowing so many people supported us is nice, and it helps us to believe there's a purpose to our lives,” says Taylor.

“The Blantons are a wonderful loving family who did an amazing thing to give back to other parents. They were a pleasure to work with and the fact that they gave so much of their time and effort for Luke was extraordinary,” says Malcolm.

“In my career, Melissa and Taylor really stand out,” says Jennifer Peterson, MD, the Duke neonatologist who was present at Luke’s birth and cared for him through his short life in the ICN. “They really weathered the storm of the hospitalization with grace, and Luke was so blessed to have them. They cherished every moment with their son.

“They touched our hearts by commemorating a room for Luke that will serve others. We all walk by that room every day, and we think how lucky we are to have been a part of their journey.”

Published July, 2020, Duke Children's Development