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As a concerned parent, I would like to share with you a little about our experience with Infantile Glaucoma.
Christopher is our littlest miracle. He was brought to us on Thanksgiving Day 2001. He was a good baby who hardly ever cried.
On the morning of April 4th, he was unusually fussy and hardly ate. We left the house and went to my kick box class where he started crying. I thought that it was because he was hungry (I later learned it was because of the bright lights in the studio) so I brought him home and nursed him. While nursing him I noticed that his right eye was cloudy.
I had just been in the pediatrician’s office 3 days prior, so I called the office to inquire as to whether this was of concern. While waiting for them to call me back I went to the computer and did a search on “cloudy eyes”. What I found as a reason for “cloudy eyes” scared me.
When the nurse from the office called back I was told that it was probably mucus, that I should “just have him blink his eye”. I am also a mother to 7 year old twins, one of whom has had other medical problems, so my instincts told me that it wasn’t “just mucus”.
I called the pediatric ophthalmologist in town that cared for my twins when they were born 7 weeks premature. The staff brought me into the office that afternoon. After a few hours and many tests later, my fears were confirmed; my baby was diagnosed with Infantile Glaucoma. He was 4 months old.
I had never heard of Glaucoma in a baby, only in adults. Our wonderful pediatric ophthalmologist, Dr. Walter Merriam recommended that we travel to another state to see a world-renowned expert in Infantile Glaucoma. Two days later, Christopher and I were on the road traveling the 6 hours to see Dr. David Walton.
Since that day, Christopher and I have made the 6-hour journey to Boston many times. He has had two goniotomies (surgery) in his right eye and one in his left eye. He was having his eyes checked an average of about every other week.
Two months ago we were able to stop the drops and Christopher has been able to maintain good eye pressures. We had tried to take him off the eye drops several times before but the pressures went back up each time. So we keep praying and see Dr. W. Merriam once per month to check the pressures to be sure the pressure has not gone back up.
If he can’t maintain the pressures off the drops he will need to return to the drops and most likely another surgery. He will only be able to have the surgery done on the right eye one more time before Dr. Walton will need to try a different type of surgery, one that is has more risks and is not as successful for children Christopher’s age
Infantile Glaucoma has put our family on a roller coaster journey. I never know when I will have to pack up Christopher and leave my husband and two other children to travel to Boston. This disease requires that families have patience, perseverance and faith. My husband and son’s, Alex and Ryan, have done just that! With the patience and faith of my family and the wonderful care from Dr. David Walton and Dr. Walter Merriam, Christopher still has his eyesight! We are working hard together to keep it this way.
I feel that this story is so important to share with other parents because it could mean the difference between a child being able to see or not. Glaucoma is a leading cause of childhood blindness that affects 1 in 10,000 children. Most pediatricians are not aware of the signs of childhood glaucoma (extreme fussiness, due to discomfort caused by elevated pressure; very large, prominent eyes; excessive tearing; tilting of the head in bright light; closing of eyes in bright light; cloudy corneas; and one eye larger than the other) and therefore it may be missed.
Christopher had several of these early signs, which were discussed with the pediatrician a few days prior to diagnosis. Early detection is the best way to prevent damage to the optic nerve, which is what causes blindness. I truly believe that parents are their child’s best advocates and that if we arm them with knowledge we may help to save a child’s precious vision.
I am also advocating that newborn vision screening and more pediatrician education be put in place regarding Infantile Glaucoma. This is vital to preventing vision loss in children. I have spoken to many parents across the states where their children were not diagnosed until much later than Christopher and have many problems due to optic nerve damage.
This is just a brief description of Infantile Glaucoma and it’s effects. For more information, please go to www.childrensglaucoma.com.
Thank you,
Michelle Cuttler
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