I’m Christin Webb, part of the Good Grief group started by CSPC’s Sarah Stewart. It’s for mothers who’ve lost children or have terminally ill children. Here’s how I’m living deeply. 

“When Mabry Kate was born, everything seemed normal. She smiled. She cooed. She was hitting all the exciting little milestones you want to see in those first few months. But around three months old, we noticed she wasn’t smiling as much. At first we thought, ‘Well, babies change.’ But then it became a few days of no smiles. So we took her to the pediatrician. They found a UTI and sent us to Children’s Hospital for IV antibiotics. We thought that was it. But she never smiled again. And soon, that became the least of our worries. Over the next four months, we watched helplessly as our baby girl’s body began to betray her. She couldn’t keep her bottles down. Sometimes her food would come right back up. Other times hours later. Projectile. Concerning enough to warrant more tests. By her four-month checkup, she hadn’t gained a single ounce since her two-month appointment. They hospitalized her. Did an MRI. At first, they thought maybe she had neuroblastoma or something called white matter disease. But they kept saying, ‘We think it’s this,’ then, ‘Well, no, it’s not that.’ Over and over. Each ‘no’ was momentarily relieving. But the uncertainty? The helplessness? That was worse. Our pediatrician said, ‘If they keep ruling things out, it’s probably something rare. Something serious.’ She recommended Cincinnati Children’s Hospital for a second opinion. Around that same time, we found out I was pregnant again. Only six months after Mabry was born. I was on birth control, and we had struggled to get pregnant with Mabry- this wasn’t supposed to happen. I was devastated -not because of the baby- but because I felt guilty. Mabry needed my undivided attention, and I felt like I’d let her down.

What we loved about Cincinnati was that we got to sit down at one table with multiple specialists. We were so grateful for that. They said they were testing for a couple of rare conditions and told us not to Google them. So I didn’t. I know lots of parents do, but my attitude was, ‘Yeah, I’m not doing it.’ A few days later, on September 19, 2014, I came home from work and immediately knew something was off. Kyle had gotten the call and waited until I walked through the door. I’ll never forget the look on his face. Mabry had Krabbe leukodystrophy. A genetic, neurological disease. So rare -only 1 in 100,000 children has it- and terminal. We called the doctor back for more details. All I heard was, ‘There’s nothing you can do. It’s Krabbe disease. She probably won’t live to see her second birthday.’ There was a treatment- but Mabry didn’t qualify. I couldn’t understand that. If there was something, anything, why not try? But they said she was already too far along. The treatment required chemo beforehand, which would only speed up her decline. She likely wouldn’t survive the process, and it wouldn’t reverse what had already been lost. It would just slow the progression, if anything. And then came the second blow: Since it was genetic, the baby I was carrying might have Krabbe disease, too. Exactly three months after Mabry’s diagnosis, we had an in-utero test done for our son, Owen. Sure enough, it came back positive. So there we were: Grieving the life we were losing… while preparing to fight for the life we hadn’t met yet.

The end came February 7, 2015. Mabry was supposed to go to a father-daughter dance with Kyle that night. He had gone out to get his suit ready and pick up her little corsage. I was home painting her nails, getting her dressed. I had her dress on, her shoes buckled and was just about to put on her headband when she started one of her breathing episodes. It wasn’t unusual -she had to be on oxygen, we used a pulse ox for her, suctioned often- but this time, nothing was working. Her eyes got wide. Her skin started changing colors. I went into full panic mode and tried CPR. Kyle came flying home- I must’ve called him, even though I don’t remember. My parents were on their way to take pictures before the dance. My sister and brother-in-law were, too. Everyone was there within a few minutes. My mom, who’s a nurse, walked in smiling because I hadn’t told her yet. Then she saw what was happening and immediately took over. My biggest fear was always that I’d find Mabry gone during a time when I was alone, because Kyle worked nights. But God didn’t allow that. In His mercy, He surrounded me -surrounded us- with our people. We had already signed a Do Not Resuscitate order. We’d talked about quality of life, and didn’t want machines to prolong Mabry’s suffering. The hospital staff tried everything. But she passed away that day at almost 11 months old. Kyle always played a playlist for her when he got home from work- songs he’d sing to her while I was getting ready for my job. That night at the hospital, he played it again. And he danced with her. I love to hear Kyle tell the story. He says he did get his father-daughter dance, and it was the ultimate one- because he was holding her when she took her last breath. Later, he told me, ‘Everything I loved about her left my arms and went to be with our Creator.’ He said he has no excuse not to believe in God- because he literally felt Mabry leave his arms and go into her heavenly Father’s arms. And he said he was standing on holy ground.

When Mabry was first diagnosed, we didn’t even know what Krabbe disease was. But when Owen was born, of course, we knew all about it. That knowledge -hard-earned and heartbreaking- saved his life. Owen has the exact same mutation as Mabry Kate: the most aggressive form of Krabbe. Without treatment, he probably wouldn’t have lived to see his first birthday, either. That early diagnosis gave him a chance. In fact, he was actually born a month early on purpose at Duke University to get a head start on treatment. With Krabbe, especially early infantile Krabbe, everything depends on catching it fast. The disease attacks the myelin, which is the protective coating around your nerves. I’m an elementary school teacher, and I always tell my students it’s like the coating on an electrical wire: without it, signals can’t travel properly. And a baby’s brain is still forming that coating. So when the disease hits early, it’s devastating. Owen received a stem cell transplant at Duke using blood from a donated umbilical cord. That blood had the enzyme his body was missing, the one that normally fights off the toxin eating away at his nervous system. But first, he had to undergo chemo so his body wouldn’t reject the donor cells. That part was brutal. After he was born at Duke Hospital in North Carolina, he was hospitalized for 110 days. Then we had to stay within two miles of the hospital for four months. He went to the ICU three times with different breathing issues and other serious problems. It was a rough road- and all of that started just weeks after Mabry died. Thankfully, because he was a newborn, Owen doesn’t remember it. But we’ll never be able to forget those eight months of touch-and-go before we could finally bring Owen home to East Tennessee. Whenever we look back on it, though, we’re also always reminded how much Mabry’s life mattered. Her short life helped save Owen’s. And we felt closer than ever to God. Nothing was easy for Mabry or Owen, so we just kept going to Him. We had to.

Today, Owen is 10 years old. And he’s thriving. He’s in third grade, full of life, and absolutely hilarious. Owen loves sports, loves to tell jokes, and loves his baby sister (I’ll get to that part of our story next week!). He’s got a bright, witty mind and the sweetest heart. He uses a wheelchair but can walk some with a walker. So physically, there are challenges. But cognitively? He’s sharp and spirited. We don’t know exactly what his future holds. The treatment he received is still relatively new. Some kids with early infantile Krabbe have passed away in their twenties. Others are still living with increasing limitations. But Owen was part of a clinical trial- he was actually the first in the world with Krabbe to do both the transplant AND the trial. So we hope that improves his prognosis. His doctor says it’s hard to predict; each case is different. But we’re hopeful. We don’t live in fear. We know puberty can bring changes, and we’ll face those when they come. For now, we’re just so thankful. Thankful we knew what to look for. Thankful for early diagnosis. Thankful for the transplant. And always, always thankful for Mabry, because without her, we wouldn’t have had the chance to fight for Owen the way we did. He’s full of joy and always on the go- especially if we’re headed to Disney World! We’ve taken him about 10 times now, and he still can’t get enough. Neither can we. Every day we get with him is a gift.” 

NOTE: Christin will share the conclusion of her story in next week’s Live Deeply posts.