Our Story: by Candi Sturgeon
I know how you feel because as a parent I have been there too. Our story begins like most of yours – in the NICU. We went through what many of you are going through right now, or have recently experienced. When our son, Noah, was born at 24 weeks gestation he weighed 1.9lbs and was 12 inches long. Like you, we were scared to death. We were frustrated with all the technical terms that the NICU staff used and we were always on the edge of our seat wondering what next.
Noah suffered from a PDA (hole in his heart), a grade III IVH (brain bleed), and NEC (Necrotizing Enterocolitis). The NEC was surgically repaired, but Noah needed a colostomy bag for four months. He suffered from the typical preemie feeding issues and like most preemies, he was on and off the ventilator for 87 days, he had blood transfusions and high blood pressure issues. After 6 months, Noah came home from the hospital only to go back to the Pediatric ICU (PICU) for more surgery. It was just like they say – “a roller coaster ride.” It was the most difficult time in my life. Each time a new crisis arose from Noah’s prematurity, the doctors would of course explain the outcomes and the percentages of “normal” we could expect. We were told that Noah’s outcome would be grim. We learned early on to ask questions and be persistent.
We began to ask about Noah’s eyes and Retinopathy of Prematurity (ROP) very early on because, to be quite honest, this was what I feared the most. A few weeks after I asked about when they were going to check Noah’s eyes, they did and determined Noah was at Stage I in his right eye. They followed Noah closely for weeks and his eyes gradually began to worsen. I spoke with the doctors and they assured me that Noah was fine and most preemies have Stage I ROP. We felt better. The next week the Ophthalmologist came by again and found that Noah’s right eye was at Stage III and his left eye was beginning to show some Stage I growth. They performed surgery the following day and felt confident of a positive outcome. However, Noah’s right eye continued to worsen and laser surgery was performed again. This time the surgeons stayed with him longer and were more aggressive with the laser treatment in the right eye. The doctors felt the surgery went better this time. They continued to follow Noah up until his discharge from the hospital. Noah was discharged in December 2002. We were given a discharge summary that stated, “Retinopathy of Prematurity ONSET: 10/15/2002 and RESOLVED: 11/19/2002 Evaluated by Ophthalamologist who feels he will not need further surgery.”
We went home only to have Noah develop Apnea choking episodes. He was admitted to the PICU and underwent surgery which resulted in a month long stay in the hospital. Noah was near death a few times and I felt like I was dangling at the end of my rope. I forgot to call for the two week follow-up eye appointment and no one reminded me. About four weeks after Noah’s December discharge the ophthalmologist found us at the PICU.
I will never forget that January night in the PICU as long as I live. I was alone with Noah when the Ophthalmologist examined him and told me that Noah was blind in his right eye and that there was little hope for his left eye. I will never forget feeling like someone had taken a baseball bat and hit me in the stomach. At that moment I hated that doctor and could find nothing to say to him. I picked-up Noah and held him close, crying not only for our son but for the never ending nightmare that was happening in our lives, for the loss and grief that I had yet to really feel. I called my husband, Jake, who was there in minutes. We placed calls to our family and friends, and prayers went out across the country.
A new journey began that night. The next morning I was on the phone with the Ophthalmologist asking him what we could do. He said there was nothing “to do”. “There must be something,” I said. “Some Eye Institute, something.” The doctor responded, “Let me make a few calls.” That afternoon he put us in touch with a Retina Specialist at our local Eye Institute who was working with other victims of ROP. It took some phone calls and a lot of insurance shuffling, but we were able to get an appointment for Noah within a week and were scheduling surgery for the following day.
The Retina Specialist performed a Vitrectomy, Lensectomy and membrane peeling on Noah, along with additional laser surgery on his left eye. We didn’t expect much out of the right eye, but even some light perception would be helpful. We have never forgotten this surgeon. She gave us hope when there had been so much despair.
Noah is now five years old. He still has special needs in some areas, but he progresses each year. He’s an amazing little boy who we love dearly. Noah never regained vision in his right eye and also contracted Neovascular Glaucoma in that eye. His left eye is doing better than expected with vision of 20/100. Noah is very mobile and gets around easily.
Jake and I have often thought about our struggles with Noah’s early birth, but most of all we are proud to be Noah’s parents. We have come to accept Noah for who he truly is, a beautiful little boy who has a zest for life. It has never been an easy ride, but it has been a learning experience.
We started this foundation because we never want any parent to feel like we did that January night. We wanted parents who are struggling with ROP to have access to a website dedicated to helpful information and resources. We hope that this website will meet that goal, and if not, that you will contact us so that we can work with you. Most importantly, we want you to know that you are not alone with your fears and your questions.
Thank you for being a part of our lives.
Candi and Jacob Sturgeon
September 2007
