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Christian's Miracle of Sight
Christian's Miracle of Sight
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On July 26, 2005 my husband and I were blessed with a beautiful baby boy, Christian. He had respiratory distress within the first 30 minutes of his birth, but otherwise, he seemed healthy and beautiful. After a few hours, the nurse came came to take him to the nursery for routine testing. Christian was never brought back to the room. He was rushed across town in an ambulance to Wolfson Childrens Hospital Neonatal Intensive Care Unit in Downtown Jacksonville. The nurse came to tell us his blood sugar and body temperature were very low.
Christian spent the first 8 days in the Intensive Care Unit. For the first 2 days we were separated as I desperately awaited my release from the hospital across town. Christian was released with a clear bill of health, and unclear answes to the cause of his hypothermia and hypoglycemia. We were reassured that he was perfectly healthy and required no further medical treatment, other than his routine newborn well visit to the pediatrician.
When he was released I had an unsettling feeling, somewhat like a premonition, but I attributed it to the trauma and anxiety of the previous 8 days. Then came the newborn well visit with the pediatrician and everything was normal. At this office visit I commented to the doctor that Christian didn’t seem to focus his gaze or look at me. The doctor shined a little light in his eyes and said everything was perfect, and humans were not able to focus their eyes on a particular object until 2 month of age. I was told one of his blood test values was low, but that was very normal in newborn boys.
My uneasy feeling persisted, but I brushed it off. Christian was having difficulty with breast feeding, so I tried feeding him formula. At his next diaper changing I noticed a tiny spec of something red, I thought could possibly be blood. I called the pediatrician and was instructed to take him to Wolfson Childrens Hospital emergency room. When we arrived Christian had a low-grade fever. He was interned for observation and started on IV antibiotics. Numerous diagnostic tests were performed, but no infection or other causes were found. On the 3rd day of his 4-day hospital stay the attending physician came to ask me if Christian was ever followed up with an endocrinologist after his release from the NICU. He set up for one of the endocrinologist to visit that evening after she finished in clinic. The endocrinologist, already armed with the knowledge of his medical history from this hospital stay and his previous hospital stay, came in and carefully examined every centimeter and every crease of his body. She paid particular attention when examining his eyes. Christian was scheduled for an 8-hour test that following morning.
After this was completed we were sent directly to the endocrinologist clinic across the suspended cross walk, to the Nemours Clinic. There she gave us the devastating news; Christian has Panhypopituitarism, his pituitary gland does not produce any of the hormones his body needs. Christian is deficient in Growth Hormone, Adrenocorticotropic Hormone, Thyroid-stimulating hormone Follicle-Stimulating Hormone and Luteinzing hormone.
Christian is on a daily regimen of hormone replacement medications, including a nightly injection of growth hormone. In addition to his daily medication he must always have is emergency injection of hydrocortisone in case of severe illness, trauma or injury. He has a blood sugar meter to monitor his blood sugar, in order do prevent him from become hypoglycemic.
The endocrinologist referred Christian to an ophthalmologist and ordered a MRI of the brain to identify or rule out any other commonly associated midline brain disorders. Three days later we received more bad new at his ophthalmology appointment. We were told Christian has Optic Nerve Hypoplasia (ONH), an incurable disease that causes permit blindness. The doctor explained to us that the only vision Christian has is light perception. He told us that maybe with time and visual instruction he might be able to learn to see shadows. And then we where sent on our way, with no further information or instruction. By law ophthalmologists in the U.S. are obligated to get blind children and their families connected to a social worker and other available servers.
Several weeks later I called the Florida School for the Deft and the Blind, to ask if they would be able to direct me to a good source of literature about the developmental and educational needs of blind babies. The first question the operator asked me was; "Why do you need this information?" I was a little offended by the question at the time, but now I am eternally grateful and indebted to her because of it. When I answer because I have a 3 month old blind baby, she asked who diagnosed your child, and how was it possible that they didn’t refer you to Duval County Division of Blind Services and The Early Steps program? I could not give her an answer, and thinking about it today it still infuriates me. I then proceeded to contact all my local services and due the work of the social worker I was not assigned in the first place. Three months later when we went in for the MRI all of his diagnosis where reconfirmed, he has ONH, Septo Optic Dysplasia (SOD) and Panhypopituitarism.
Christian has been receiving weekly vision therapy since the age of 5 months. At his latest ophthalmology appointment in January of 2008, Christian’s estimated vision in his left eyes was 20/400 (which is legally blind) and in his right eye he only has light perception. He also has nystagmus an involuntary side-to-side movement of both eyes, which started around 8 months of age and mild light sensitivity. When he wants to focus his vision on something he looks up with both eyes into he left hand corner, with his right eye almost completely turned inward; this is called his null point. This is the eye positioning he uses to try and get the most out of the little vision he has.