Special Focus
Hayden's Story
Hayden was born July 23, 2003 to mom Julie, dad Brian, and sister, three year old Madelyn.
The day after Hayden was born, his pediatrician came to examine him. The pediatrician determined that Hayden had undescended testicles, which is common in boys, and did not have good eye reflexes in either eye. Because of this, an ophthalmologist would be called to come and examine Hayden.
The ophthalmologist came in that evening to speak to Hayden’s parents about the examination. They were told Hayden had cataracts in both eyes and that Hayden had no irises (the colored part of the eye). They were also told that Hayden’s ear was oddly shaped and he had a skin tag. It was at this point the doctor’s started suggesting that Hayden may have some kind of syndrome. Hayden’s pediatrician scheduled a kidney ultrasound to confirm they were good, as the eyes and kidneys form at the same time. The ultrasound provided good news. Hayden’s kidneys were fine.
Julie and Brian were referred to a doctor in Hershey to look into the other problems the pediatrician and ophthalmologist found. The family was sent home on Friday to await a call from the doctor from Hershey on Monday. They were home just a few hours when the doctor in Hershey called to give them a referral for a doctor in Philadelphia he thought would know more about what Hayden had, Aniridia and possibly WAGR Syndrome. They called the doctor in Philadelphia and were squeezed in the next morning at 8:00 a.m. The doctor confirmed the Aniridia and cataract diagnosis and scheduled Hayden for two cataract surgeries. Hayden was also referred to a geneticist to have genetic testing done. This testing confirmed the WAGR diagnosis, which stands for Wilm’s tumor (a cancerous tumor of the kidneys), Aniridia, Genital/urinary abnormalities, & Retardation. There are only about 300 reported cases of WAGR Syndrome in the world.
Surgeries during Hayden’s first year were as follows: two cataract surgeries at 8 & 10 weeks of age, which he now wears contact for the lenses they removed during this surgery. Two surgeries to repair a torn retina at 3 & 6 months. Surgery to remove scar tissue from his left eye due to cataract surgery at 10 months. Surgery to remove his undescended testicles because of abnormalities at 12 months. July ’05 marks a year free from any surgeries.
Hayden has been developing fairly well. At seven months Hayden wasn't rolling over or sitting up. Now he is rolling, actually doing forward rolls, walking, running, climbing, just being a two year old. He takes Speech, Occupational, Physical, & Developmental Therapies. His therapists are fabulous and Hayden just adores them! They are a big part of the reason he is doing so well. He follows up with his ophthalmologist in Philly every four months and he also goes to Hershey for kidney ultrasounds every three months to check for Wilms tumor. We will be doing this until about 8 years of age.
To learn more about Hayden and WAGR syndrome, please visit his website at Hayden's Website.
Make a donation now to help support UCP's programs to make a difference in the lives of people like Hayden.
View a Printer-Friendly Version
Go back to top