Baby Luke at two days old
The NEC Society is honored to share stories of babies impacted by NEC- this is Luke’s story.
By Luke’s Mom: After a miscarriage followed by three healthy pregnancies, resulting in a daughter and two sons, my husband I were surprised to learn that we were expecting again- this time with twin boys. While overwhelmed at first, I soon became excited for these sweet little twin boys. Aside from frequent doctor visits and high risk testing, the pregnancy was uneventful and on August 5, 2015, just shy of 35 weeks, we welcomed our sweet boys into the world. Luke Randall was born first at 5:42 pm weighng 5 lbs, 1 oz and Wyatt Benjamin was born second at 6:18 pm weighing 4 lbs 12 oz. We got to see them before they went to the NICU, and both were doing great. Wyatt needed oxygen, but Luke was breathing on his own and was nursing from me within 24 hours.
Fast forward a week, and by all accounts the boys were thriving. Wyatt was almost off oxygen, and Luke had mastered both bottle and breastfeeding and was almost ready for an open crib. Then out of the blue on the morning of August 13th, Luke became inconsolably fussy. Within two hours his belly started to distend, and after an abdominal x-ray the doctor diagnosed him with NEC. I had never heard of the disease before, and knowing nothing about it did not realize the seriousness of it. They began treatment immediately and decided to life flight him to UNC Children’s Hospital to be in close proximity to a pediatric surgeon should he need surgery. Since I didn’t realize how serious his condition was I didn’t insist on letting the boys be placed together so that Wyatt could say goodbye, thus we have no pictures of our precious boys together. After they loaded Luke up we said goodbye to Wyatt and piled all our other children into the car to drive up to Chapel Hill.
Upon arrival, the doctors at UNC realized Luke’s bowel had perforated so they whisked him into surgery where the surgeon diagnosed him with NEC totalis. They decided to support him aggressively throughout the night and take one more look in the morning to see if there was any improvement. After a long night, during which we baptized him in case he didn’t make it through, they took him away for another surgery. The results were not good. Almost the entire bowel was now dead and had to be removed. He had a mere 10 cm of intestines left. We decided to continue life support to see if he could fight through, after which we could tackle the problem of the lost bowel. By that night, however, it was clear he was not going to make it. He was maxed out on life support and was still deteriorating. His kidneys were failing, and his blood pressure was so low that his veins were collapsing. We did not want him to be in pain and did not want our baby to die on a table hooked up to machines, so we made the agonizing decision to pull support. We tried to give him many of the normal daily experiences he would have had in our family, so we let him watch football with his dad, read him books, bathed him and dressed him in pajamas. Since he had only ever been in the hospital, we decided to take him outside to have his ventilator removed. It was there, under the beautiful starry sky that his short little life ended. He opened his eyes and looked at us one last time and then passed away in our arms early in the morning of August 15, just 10 short days after he was born and less than 36 hours after he was diagnosed. Luckily, we are still blessed with our wonderful other children, Evelyn-6, Carson-4 and Simon-2, and Luke’s twin brother Wyatt who is at home and thriving. While we are so thankful for our family everyday, there will always be a part of it missing and we will forever carry the sadness and grief over the loss of our sweet little Luke.
NEC is a devastating disease that most people don’t know about until it affects them. My heart breaks for Wyatt who will never know his twin brother that he spent almost eight months with in my belly, and for Luke’s older sister and older brothers who will never get to grow up with him. Our one comfort is that in Luke’s case we got to say goodbye. His sister and brothers got to hold him and I truly believe that he knew he was loved and therefore died peaceful and happy. Our hope is that, through groups like this one, awareness will be raised and more research funded to prevent this devastating disease so that others won’t have to experience this pain and grief.
You can read more stories of babies and families impacted by NEC on our NEC Stories page.