By Amanda Goff
Mommy to Davis
Lissencephaly
Born March 2020
Our journey actually started earlier than we realized. During my third trimester, Davis was measuring very small. Because of that, I had to see a specialist weekly for ultrasounds and go to my doctor every week for stress tests. I was told that since I’m small, my baby was just small too. Nothing concerning ever showed up on his scans.
After Davis was born, everything seemed okay at first. But when he was about four months old, we noticed something wasn’t right. He was crying constantly and had really bad acid reflux. One night, his Owlet monitor went off twice, showing red—his heart rate was extremely high. He was also doing these crunching movements where he looked very uncomfortable. We were told it was just reflux.
We took him to the ER, but the doctor we saw dismissed our concerns, labeling us as anxious first-time parents and even encouraged us not to use the Owlet. We went home, but something still didn’t feel right. We followed up with his pediatrician, who thankfully listened and referred us to neurology. Unfortunately, the appointment was still a month away.
A few days later, Davis clearly had what looked like a seizure, and we rushed him back to the ER. This time, they took us seriously. Davis was airlifted to a children’s hospital with neurologists on call. He had an MRI, and early the next morning we were told he had lissencephaly.
At the beginning, our hopes and dreams looked like what most people would consider normal. We dreamed of Davis being able to eat and feed himself independently, take his first steps, go to school, and make friends. We imagined taking him to soccer practice, going to the park, and letting him try ice cream—just everyday things that most people take for granted.
We received Davis’s diagnosis at four months old. After he was airlifted and had his MRI, everything changed. I remember not fully grasping what the doctors were saying. I remember being told he would never be able to drive. They showed us his MRI and explained that he was missing gyri—the wrinkles in the brain—and that he had what’s called a smooth brain. Beyond that, much of that moment is a blur. I remember feeling shocked and in denial.
At first, we were completely devastated. It was incredibly hard to get through each day. Over time, lissencephaly has simply become part of our daily life. While it still saddens us, we love Davis so deeply for who he is. We are grateful for every single day we get with him. He truly is amazing.
Davis faces many struggles. He is unable to walk, talk, or perform any self-care independently. He is 100% G-tube fed, though he can eat small nibbles when he’s feeling up to it—his favorite is hot fudge. He also has CVI, so his vision is limited. As a family, we’ve had to adapt to a world that isn’t built for children with disabilities. Everyday outings require careful planning. If we go out to eat, we make sure it’s not loud or overstimulating because noise can trigger seizures. When we go anywhere, we plan ahead for diaper changes. When we visit parks, we look for accessible ones. Even simple activities take more thought and preparation.
We’ve had several hospital stays, though thankfully none have been extremely long. When Davis was first diagnosed, we stayed in the hospital for a few days. He’s had multiple outpatient procedures that required full days at the hospital but allowed us to go home once he recovered. His G-tube placement surgery required a three-day stay. We are frequently at the hospital for specialist appointments.
We first connected with On Angels’ Wings in March of 2023. Davis was three years old when he had his first Journey Session, which we scheduled around his March birthday. Since the weather can be cold and windy for him that time of year, OAW rented an Airbnb so he could be comfortable during his session. We were incredibly grateful. Our photographer was so sweet, understanding, and accommodating, and she worked beautifully with our family. We loved her so much that we now always request her.
Davis is nearly six years old now, and he has made progress in his own way. He’s about to receive an eye-gaze communication device, which is a huge milestone for him. It will take a lot of work, but if he can use it to communicate his needs and wants, it will be life-changing. He has said words here and there that his family understands—once he even said, “I love you.” He’s also quite the roller and can roll from his back to his tummy.
As a family, we’re coping okay. We try to make life fun for Davis and show him as much of the world as we can. We’ve taken him to the beach several times and even to the mountains once. Above all, we make sure he knows how much he is loved every single day.
Davis is such a happy, sweet boy. He is the strongest person I’ve ever known. His accomplishments may look different than others, but he has had to work so much harder for every single one. We are incredibly proud of him.
Looking ahead, we hope Davis can learn to use his eye-gaze device to communicate. We hope his health remains stable and that he stays happy. In the coming years, we hope he gets to experience many more family adventures—more beaches, more mountains, and more memories. More than anything, we just want him to stay healthy and joyful.
The photos we’ve received through On Angels’ Wings mean so much to our family. We’ve done sessions three years in a row, and we have prints from each one. We love seeing the memories of Davis at each age and all the smiles that have been captured. It means everything to have yearly photos where our entire family is included. It’s comforting to know that no matter what happens in the future, we will always have these pictures of him.
What On Angels’ Wings does is so important. When families face the loss of a child—or the anticipation of that loss—having tangible memories like photographs is priceless. These images are something families can hold onto forever. It’s also incredibly meaningful to connect with photographers who are empathetic and understand what you’re going through. OAW removes the burden of trying to find someone you trust during an already overwhelming time. We are so thankful for the support they provide.
