Finding out that your baby or child has a serious diagnosis is devastating for any parent. Whether it’s your first child, or you’re an experienced parent, the news will hit you like a ton of bricks, leaving you feeling scared, lost and very alone. I have found that hearing from other people who’ve walked in your shoes is the most valuable gift when you’re in this situation. Knowing that you can connect with someone else who knows exactly how you’re feeling really helps in navigating the process. So, I’m hoping that sharing our story can help someone else going through the early stages of being diagnosed.
My husband, John, and I found out in the fall of 2009 that we were expecting our first baby. I had a perfectly typical, uneventful pregnancy, and we were thrilled to find out we were going to have a baby girl. My mom was an ultrasound sonographer, and she was doing ultrasounds whenever I wanted to see the baby. But at 37 weeks, during one of these “just for fun” ultrasounds, my mom discovered our baby had a large cyst suddenly forming in her brain. We were terrified, devastated and didn’t know what would happen next. All our dreams for our baby girl felt like they were slipping away. We consulted high-risk obstetricians who recommended a C-section delivery at 39 weeks. Avery Grace Devereux came into the world on April 13, 2010, and we were so relieved that she was seemingly very healthy, despite the cyst.
She was immediately taken to the NICU, and they ran test after test to determine exactly what the cyst was and if any other part of her body was affected. Late in the day, when we were expecting to hear some answers, instead a team of doctors came into our room, and I was shocked to see the title, “Ophthalmologist,” on their white coats. A mother’s instinct is strong, and I knew that something was seriously wrong before they even started talking. They explained that Avery did not pass her newborn eye test and that her corneas – the very front part of her eye – were very scarred. After the initial shock passed, we learned that Avery would be referred to a Pediatric Ophthalmologist at our Children’s Hospital, and he could provide us more answers.
And he, along with our cornea specialist, sure did. We learned more about the eye in those first few weeks than we ever wanted to know. Avery was diagnosed with a rare disorder called Peter’s Anomaly. She has it bilaterally, which means both eyes are affected. Her corneas were scarred and cloudy, her irises fused to the back of the corneas, and she had severe glaucoma. The only possibility for her to have a chance at sight would be corneal transplants and surgery for glaucoma. Sometimes medications alone and less severe surgeries can be tried first, but Avery’s case was too far gone, and she didn’t have these options. We prepared for our newborn daughter to receive corneal transplants as well as surgeries to help with the pressure in her eyes. We were given a bleak prognosis – the doctors did not expect her to have much vision, if any at all. They told us this would be a long road ahead with many peaks and valleys. At the same time, we were still dealing with the cyst in her brain. It also required surgery as it would cause pressure on her brain. Fielding all of this serious information and trying to process it as new parents was more stressful than I could ever explain on paper. All of the typical challenges of a newborn, coupled with daily appointments with specialists, researching new diagnosis, and preparing for several serious surgeries was almost too much to take.
Devastatingly, Avery’s first brain surgery (when she was only 5 weeks old) ended up having serious complications. The short version is that we should have consulted a pediatric neurosurgeon, rather than the general neurosurgeon who performed the surgery. The saying, “if I only knew then what I know now,” couldn’t apply to a situation more perfectly. The events that transpired from that surgery changed Avery’s life forever, and our advice to any parent is to seek out a second opinion from a pediatric specialist for any serious diagnosis. Avery contracted bacterial meningitis, which caused scar tissue to wreak havoc on her brain. She developed hydrocephalus, has had 6 brain surgeries since the initial one, and now has a VP Shunt to control the fluid in her brain. She also developed epilepsy, and in 2016, spent six weeks in the ICU because of the effects of unrelenting seizures. She has cerebral palsy as a result of her brain conditions and fights every single day to perform tasks that come naturally to other children. She takes several medications and eats a special, strict diet that controls her seizures. Our lives sort of revolve around Avery’s several conditions and their demands.
But back to her eyes. Since her initial transplants, as of now, Avery has endured 27 eye surgeries! Corneal transplants are not always successful in babies, so we experienced rejections and failures due to outside reasons. Glaucoma flaring up also has had consequences on Avery’s vision her whole life. It’s been a rollercoaster of stability and instability, and the status of her vision can change on a dime. This was most evident in 2015 when she experienced a retinal detachment in her right eye, which had had the most surgeries. The detachment was repaired, but being that the eye had historical problems of fluid regulation, it was not able to recover from the trauma. We lost that eye later that year, and she now wears a prosthetic shell like a champ. We closely monitor her working eye and hold onto hope that she will retain some vision in it. She compensates very well for what she has, which is estimated at 20:1000 with her glasses on, with no depth perception or peripheral vision. She learned to walk with a white cane starting at age 2 and began learning braille at an early age as well. Today, at 7 years old, we are happy to say that Avery just graduated kindergarten, has mastered some early braille skills, and did an amazing job academically, considering how far she is behind her peers cognitively. She attends regular physical, occupational and vision therapy, and we modify many aspects of our lives to help her learn, grow and thrive.
Finding different support groups and organizations like fearlessHOPE is priceless in navigating life with a child with special needs. When we were in the PICU for six weeks last year, a friend introduced us to fearlessHOPE. FearlessHOPE hey lifted our spirits by starting a huge prayer circle for Avery and by offering to help our family with a financial need. Just the connection with people who want to support you through hard times was immensely appreciated. Like I said, the most valuable resource you’ll find in this process is knowing other people who walk in your shoes. This life has not been easy, but you learn to appreciate the little things. I guarantee you will feel more excitement and pride when you witness your child’s achievements than any other parent will ever experience. Thank you for letting me share our story!