I found out I was pregnant on August 29, 2009. I was so nervous and so excited because all of my life all I ever wanted was to become a mom. I made my baby doctor appointment started taking prenatal vitamins and quit all of my bad habits. My First trimester was a breeze! At my 20 week appointment we found out we were having a healthy baby girl! Around my seventh month of pregnancy my doctor was concerned about preeclampsia, hypertension, and gestational diabetes. I was gaining weight and retaining water like crazy. I was tested and retested and tested some more. I had mild hypertension. I started to go into the hospital weekly for non stress tests to check my blood pressure, baby’s activity and both of our vitals. By my eighth month I had full blown hypertension and mild preeclampsia. I was put on partial bed rest. I had tried to manage the hypertension myself by changing my diet, resting and putting my feet up multiple times a day. But nothing I did seemed to help. I quit my job earlier than planned to take care of my body and my baby. I started to feel depressed and lonely. By my ninth month I had gained excessive water weight and could no longer wear any of my maternity clothes. Even my feet grew larger!
My doctor scheduled an induction. On Friday, April 23, 2010 I checked into the hospital at 7am. By 8am we had started pitocin to jump start labor. My body didn’t handle the pitocin very well. I never fully dilated. My water broke around 2pm that afternoon but by 830pm it was clear I would need to have a cesarean. I was devastated and tried to convince my doctors team I could have her naturally but by 9pm I was being prepped for surgery. At 9:51pm Chrissa Hayden Hart arrived emergency c section and my whole world was forever changed.
Chrissa past all of her apgar tests with flying colors ! The nurses had zero concerns. Chrissa looked great. She weighed 8lbs 1 ounce, was 21inches long, a full head of hair and had a strong heartbeat! She was perfect !!! We stayed three days in the hospital as precaution after a Csection. My doctor told me Chrissa had the umbilical cord wrapped around her neck almost 3 times! She didn’t nurse very well so we supplemented with formula. I was ready to take my baby home but I was in a lot of pain. Luckily, I had help at home for the first two weeks and I needed it. Chrissa was a delightful infant. She didn’t fuss much and only cried when she needed to be fed, changed or held. She didn’t hold eye contact at all until she was 3 weeks old. I noticed then that she was a bit cross eyed. At her four week check up our pediatrician didn’t have any concerns. I went back the doctor when Chrissa was five weeks because she got a bad diaper rash. That doctor immediately asked if we had a referral to see an Ophthalmologist. I said no and that her six week appointment was next week with our regular pediatrician. She suggested we have our pediatrician give Chrissa a thorough Eye exam. The next week came, I took Chrissa to her appointment and the doctor recommended we see an ophthalmologist. He said that there is a chance she might have an eye condition but in order to determine that we would need to have an MRI. I made the appointment with the ophthalmologist at Seattle Children’s Hospital. The ophthalmologist agreed we should have an MRI. We scheduled the MRI for August because Chrissa would be four months old then.
The night before the MRI was so hot. We almost broke heat records in Seattle. I remember sitting with Chrissa on the couch in our tiny apartment with a cold cloth on her head. As she started to fall asleep I said a prayer asking the lord to watch over my little girl, keep her safe. I said no matter what the outcome I will do everything I can to keep her happy and healthy. Please watch over Chrissa. I barely slept at all but Chrissa slept through the night. August 17th was a terribly Nerve racking and stressful day. Chrissa was just four months old being admitted to the hospital for an MRI. I was really nervous about the anesthesia and how little she was. She wore an infant sized hospital gown and had the IV put into her foot. I cried a lot that day. I was so worried. The MRI only took about 90 minutes and everything went well. As the Anesthesia wore off Chrissa woke up smiling !!! I was so relieved my baby was okay.
The next few weeks were kind of a blur. I didn’t sleep well, I cried often but I really just tried to keep it together for Chrissa. The day we got the MRI results was a day I’ll never forget. I had no idea what had happened. I was given all the information but I couldn’t even begin to process it. I was confused. Sad. Scared. Angry. Lonely. And most of all I was left feeling hopeless. I had never heard of Optic Nerve Hypoplasia before. I had no idea having small Optic nerves could lead to Endocrine issues. I didn’t know what Nystagmus was or how the Pituitary Gland regulates body temperature. The doctors told us that Chrissa would likely not meet her childhood milestones like a typically developing infant would. She might not ever sit up or feed herself. She might not talk well and will struggle with learning disabilities. I had a lot to learn about ONH and I had to start my research soon! I pulled myself out of the depressed state I was in and decided to dive into research and learn to be an advocate for my daughter. I already knew a lot about the development of infants and children because my college degree is in Early Childhood Education/Child care Management. I have very little experience with children who have special needs. Of course I went straight to the internet. I read as much on Optic Nerve Hypoplasia as I could find. But it wasn’t much. We went back to Seattle Children’s Hospital for eye exams every 6 months and I tried to learn as much as I could from the lead researcher and their team but no one there seemed like they wanted to help me. I started to look around for second opinions only to find that many doctor offices did not accept our health insurance and money was already extremely tight. I told my employer about my search and how I was struggling and they offered to help me. They set me up with an outstanding pediatric opthamologist within 30 minutes of our home! I was beginning to think I would need to travel outside our home state to get help so this was a huge relief!
I met with the new Opthamologist shortly after Chrissa turned one year old. Chrissa was always in high percentile at her well baby check ups. In height she is in the 90%. Chrissa had started Physical therapy, Speech therapy, and large and small motor therapy, and vision therapy when she was nine months old. In February 2011 We started having weekly home visits with therapists, Chrissa was ten months old. To this day I am so grateful for all the early intervention help and therapy we were fortunate to get. I cannot say enough how much we benefitted from these services. I needed the support and so did Chrissa. She met most of the typical milestones right on track so far, holding her head up, rolling over, sitting up, crawling and she walked at thirteen months! I was thrilled that she was developing at a “normal” pace like other infants/toddlers her age. But I knew it was going to be a long road ahead. I decided to move forward and work exclusively with the new Opthamologist we had met. He was familiar with ONH and had been treating a few patients previous to meeting us. He made me feel hopeful and was more supportive and encouraging than the team from SCH. Dr. E talked to me about an eye muscle surgery called Strabismus surgery. Strabismus surgery could help with Chrissa’s Nystagmus, her head tilt (torticollis) and some vision but mainly it would help the crossing and wandering of her eyes. We got a lot of negative comments from the general public about her being cross eyed and always looking sleepy. This surgery could help improve all of that. Ultimately we decided to wait to have surgery until she was two years old.
On May 18th, 2012 Chrissa had Strabismus surgery. The surgery was a success! Her crossed, wandering eyes diminished over time and her head tilt decreased as well. She also gained peripheral vision so now she was catching glimpses of things and movement from the corners of her eyes. This was so exciting for us! Chrissa started running and loved to swing on the swings now! She climbed higher, jumped higher and no one commented on her crossed eyes anymore. I was feeling much better about life with ONH! It was around this time where I found my amazing support group on Facebook. A group where other moms and dads asked questions just like the ones I had! I was so happy and thankful to find out that I wasnt alone! There were other kiddos all across the world who were struggling with their diagnosis. Chrissa wasn’t the only one! I started to make connections with other families through emails and messages comparing our notes from appointments. It was a true godsend! I’m an active member of this group to this day and I’m so appreciative to be a part of it.
Chrissa started at a developmental preschool through our local school district when she turned three and a half years old. This was her first day care setting. I was reluctant to enroll her any earlier due to the fact she was diagnosed legally blind. I didn’t want to leave her at just any daycare or with a babysitter so I brought her to work with me because I was a nanny. Because of her Visual Impairment Chrissa would be on a special education plan in school. In Washington we call this an IEP (Individualized Educational Plan). Chrissa had multiple pairs of glasses at this point in time. Some were just for eye protection others had a small magnification but we weren’t even sure if they helped with her vision. She wore her glasses to preschool. Her teachers weren’t sure if the glasses helped either but she wore them mainly for table work, not outside on the playground for large motor activities. Chrissa’s measurable acuity with her glasses on was 20/250 in her right eye (which is effected worse) and 20/70 in her left eye on October 12, 2014. Chrissa started her introduction to Braille while attending this preschool. Because this school was a developmental Early Childhood Center we were able to incorporate her therapy sessions into class time! She continued receiving large and small motor, Orientation and mobility, Braille with a state licensed TVI (Teacher for Visually Impaired) and speech therapy services. This would continue until Chrissa started Kindergarten at a mainstream Public School.
Chrissa flourished at preschool. She was able to graduate from all of her therapies! This was almost too good to be true. I honestly questioned the school’s decision to advance her to Kindergarten into a general education classroom. She would only receive an IEP for Vision services. In the IEP from our preschool it was determined Chrissa would be a dual reader. She would continue learning Braille for the rest of her life but also learn to read large bold font. Chrissa’s TVI agreed. Kindergarten started in Septmeber 2015. Chrissa attended the half day program at a public school close to our house. Transportation was provided but I prefered to drive her myself. General education was tough! Chrissa struggled to keep up with her peers. The school assigned Chrissa a para-educator to help assist her throughout the day. She was starting to act out at times. Be disruptive and had some minor behavioral issues. She wasn’t happy and didn’t enjoy going to school. Chrissa continued to struggle throughout the year but I spent as much time as i could tutoring her and helping her at home. At the end of the school year we had the final IEP meeting for the school year. The exit IEP. I woke up nervous about this meeting like I usually do before any ONH related meeting. But moreso I was nervous that the school would decide to hold Chrissa Back a grade. The meeting day came and I was greeted by the usual staff involved in the IEP but also a new face. I didn’t know it but I had just met Chrissa’s new Mid-level Blended Program teacher.
For Full day first grade Chrissa was transferred to a school outside of our home town. A Special Education bus transports Chrissa to the town next to ours so she can attend a Blended Program. I wasn’t sure I understood why they wanted to transfer her away from her neighborhood school. Then I researched the Blended Program and I was thoroughly impressed to learn this school provided a special services center. An atmosphere more relaxed than a mainstream General Education classroom. Where each student learns at his/her own pace with the assistance of Para-educators and therapists! Chrissa would attend General Education with peers her own age for 40% of the school day and attend Special Services 60% with kids who learn in similar ways! GENIUS!
Of course I was disappointed we had to switch schools and that she would be farther away from home but I was thrilled about this incredible new school program! Chrissa would get one on one help in every subject. I make sure to volunteer at her school as often as I can. Playing an active role in her education is very important to me. We just finished up the school year and Chrissa is reading at a first grade level! First grade sized font!!! I’m so proud of my girl and how hard she’s worked to get where we are today. She loves school again, she is making new friends, always wants to read and write notes and she participates in most of the typical P.E. activities with some assistance. Today Chrissa is an active 7.5 year old. She loves to swim, climb, slide, swing, do gymnastics, ride her bike (with training wheels),zip around on her Razor scooter like she isn’t Visually Impaired and she is a Brownie in Girl Scouts. She has started to realize that she is a little more unique than other kids her age. She knows she has a Visual Impairment and has just recently started to ask me more question about it. Why it happened to her and not her best friend or her cousin. I’m doing the best that I can answering these questions without my emotions pouring out in front of her. I try not to cry in front of her. Even when she was a baby I held in my tears and emotions until after she was in bed for the night. There are still days I can’t hide it from her but I never tell her the real reason for my sadness. I’ve taught myself a lot about ONH and now I’m learning to teach my daughter. I’m teaching her how to be an advocate for herself. It’s important she understands that she isn’t different, she is perfect the way she is. My ONH princess has changed my entire outlook on Motherhood and Life. She brightens my world and brings joy to everyone around her. My daughter is Brave and she gives me the strength I need to be Brave.
Originally published in the MAGIC Foundation newsletter 2017.