Diving into Congenital Glaucoma – Head First

Wow. I finally have something “important” enough to blog about. Thanks Ann for the opportunity! I don’t think I can express just how much I truly appreciate it.

First, an introduction. My name is Stacie. I’m a married working mother of 3 beautiful children. Aaron is 14 and has Aspergers (high-functioning autism), Jamie (my girl) is 13 and was recently diagnosed with bi-polar disorder, and Conner, my 3 year old, was recently diagnosed with “late-onset” primary congenital glaucoma in his right eye. It’s Conner’s challenge in life that brings me to this blog.

If you are anything like me, you have googled and googled and googled until you can’t google no more, trying to find someone who is going through something at least half way similar to what you are. Raising a child with Congenital Glaucoma.

Guh. Just the sound of it. I’ve noticed that medical professionals say “Congenital Glaucoma” in the same tone of voice as they say “Cancer.” I know it’s not cancer. It’s not life-threatening, but it’s very scary all the same.

What is Congenital Glaucoma? How often does it happen? What causes it? Is it genetic? Can it be cured? How many surgeries will he/she have to go through? Will there always be eye drops? Will my baby go blind? All questions I asked myself the first time I sat down at my computer to find out all I could find about Congenital Glaucoma. It’s my hope I can share some of the things I’ve found, some of the experiences I’ve had, and some of the knowledge I’ve gained, plus help parents of kids with Congenital Glaucoma network and provide each other with support.

This was the best day!

Anyway, I’m getting ahead of myself. I’d like to start off telling Conner’s story so far in little segments. I believe there are huge lessons in the little segments that may help some parents with early diagnosis, and early diagnosis is the key to less vision loss.

So, I’ll start with Conner’s beginning. Conner is my “miracle” baby. He’s the product of 7 years of unexplained infertility, one miscarriage, and lots and lots of prayers. I teared up the first time I felt him kick inside my tummy. I relished every plate of nachos I craved the entire time I was pregnant with him. I didn’t care about the baby weight. I didn’t care about the pregnancy symptoms, the stretch marks, and the other unpleasant parts of pregnancy. All I cared about was getting Conner into this world as healthy as possible. I ate right. I exercised (unheard of for me). I gave up caffeine. I got plenty of rest. I drank tons of water. I didn’t touch tuna fish or the cat litter box, and if a truck with bad exhaust was in front of me, I changed lanes just in case. In short, I did everything I could to get him into this world happy and healthy.

I vividly remember the first time I heard him cry. I sobbed like a baby. I think I may have cried louder than he did, I was so happy. There he was. 10 fingers, 10 toes, staring at me with his halo of blond hair and his beautiful blue perfect eyes. I was the luckiest person in the world. He got a 9 on his Apgar. He was acing tests already. I rejoiced. I paid for all the extra genetic tests offered at our hospital. He aced all those too. What a kid!

Check out those dimples.

Check out those dimples.

We took him home from the hospital. He was the perfect baby. He rarely cried. He slept through the night at 2 months. We’d wake up, and he’d be laying in his crib giggling and cooing, starting the day off right. He has the cutest dimples.

We took him to every well-baby visit, faithfully. 2 months, 4 months, 6 months, 9 months. Each time, the pediatrician checked his ears, his eyes, his mouth, his groin, and pronounced him as healthy and perfect as we knew he was. We were enamored with our sweet natured little man. I mean, look at that face? How could you not be? ๐Ÿ™‚

For his 1st birthday, his grandparents came all the way from Iowa to Texas to visit. After a couple of days, Grandpa said “You sure can pick Conner out of a crowd. He’s the one with one eye bigger than the other.” I smiled at father in law and told him that having the appearance of one eye larger than the other was actually an eyelid placement thing that runs in my family. We all had a nice chuckle about my family (another story for another blog) and ate cake.

In retrospect, I can look at this picture and see the signs of congenital glaucoma.  At the time though, I had no clue.  I mean, pediatricians are supposed to catch that kind of thing, right?

Conner, of course, got to smash one of his very own, and he was a master at it.

Notice how, in the picture on the right, the iris (blue part) and pupil (black part) of Conner’s right eye is larger than his left. That’s called buphthalmos – or Ox eye – and is a classic sign of congenital glaucoma. In retrospect, I can look at this pic and see the signs of congenital glaucoma. At the time though, I had no clue. I mean, pediatricians are supposed to catch that kind of stuff, right?

We cleaned off all the cake in the bathtub, opened presents, and went on with life. Conner grew. He learned to catch a ball really early. We were (and still are) proud. He continued to be an easy going little guy. We went to our 15 month and 18 month well baby exams, and Conner passed them with flying colors. Life went on, and it was wonderful. We took Conner to the pumpkin patch (see gratuitously cute pumpkin patch picture below), we went trick or treating, we had his first major Christmas. If Conner shielded his eyes from the Texas sun, we didn’t think anything of it. So his right eye teared up a little more than the other one when exposed to light. That was no big deal, right? Or was it? Surely if this wasn’t normal, the pediatrician would have said something when we joked about Conner needing sunglasses, wouldn’t he?

Shortly before Conner was 2 years old, we made a cross-country move, and moved to Idaho, where I’m originally from. No surprise to me, the sun shines just as bright in Idaho as it does in Texas. Conner continued to thrive and grow, and love the outdoors, he just loved it with a squint.

When he was 2, we took him for his well child visit with a very influential pediatrician in the Boise area. I trusted this pediatrician implicitly. After all, he was my pediatrician, and I turned out okay. Plus, he is the head of a major medical group in town. That means he’s good and thorough, and would surely catch something if it was wrong, right? No matter how rare? Guess again. The pediatrician pronounced Conner in perfect health. We continued on in idealistic ignorance.

Gratuitously cute pumpkin patch picture

Gratuitously cute pumpkin patch picture

Shortly after Conner turned 2, I was beginning to get an inkling that something wasn’t right with Conner’s eye. Friends noticed, and commented on how unusual his eye was, but how cute he was. I pushed the size of his eye out of my mind, and justified myself by rejoicing in the fact that Conner was learning his colors, his numbers, and his alphabet. To me, that meant he could see absolutely fine, and I was just being paranoid about his eye. Still, in free and quiet moments, those that are few and far between in a house with 2 teenagers and a toddler, I googled. I searched every term I could think of. “Large eye. Small eye. Different sized eyes.” Nothing I googled led to me to believe anything but that my husband and the pediatrician were right, and there was nothing wrong with Conner’s eye. Still, I wondered. And I wondered.
Months went by. I’d stare at Conner in the bathtub. One of the few times he is actually still and in a confined area. Those of you with toddlers know what I’m talking about. ๐Ÿ™‚ I’d look at his eye and think “Is that normal?” “Why am I the only one that really questions it?” “I must be crazy. He seems to see just fine.”
I started asking Conner. “Does your eye hurt, honey?” He’d say “No mommy. Doc Hudson eyes blue.” He calls his eyes his Doc Hudson eyes, after the character in the Cars movie. How cute is that?
Have you ever seen a cuter Octopus? And check out that right eye.

Have you ever seen a cuter Octopus? And check out that right eye.

Anyhow, I’ll continue this blog in another post in a few days, and I promise I”ll explain what finally led to Conner’s diagnosis then. In the meantime, what I’d like for people to take away from this blog is this: Your pediatrician is NOT an eye doctor. He/she is checking height and weight and milestones, and giving a cursory glance at your child’s eye, but chances are, your pediatrician is not going to catch a serious eye malady in a toddler.

Having one eye larger than the other is NOT normal. If your child appears to have an eye larger than the other, or both eyes appear to be growing larger and bulging, even if slightly, take your child to an optometrist or ophthalmologist A.S.A.P. Even if your pediatrician has told you that your child’s eye/eyes are normal.

If your child has photophobia (extreme aversion to sunlight), or excessive tearing in one or both eyes, take your child to an optometrist, just to be on the safe side. These are classic signs of congenital glaucoma, and the sooner it’s caught, and treated, the better chance your child will have at normal vision.

You are your child’s advocate, and your instincts are worth something. Trust them.

If you know someone whose child’s eyes look like Conner’s please have them read this blog.

Finally, if you have a child with congenital glaucoma, I’d like for you to know that you are not alone. I’ve met a couple of other ladies whose kids are going through the same thing. If you’d like to meet other parents dealing with congenital glaucoma, please email me at connersmom@petersengraphics.com. I’d love to talk with you.

Until next time,
Stacie

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27 responses to “Diving into Congenital Glaucoma – Head First

  1. Stacie, thank you so much for writing this up, especially for outlining some of the warning signs of congenital glaucoma, and the reminder that our children’s pediatricians are not eye doctors, and will often miss eye problems. I know our pediatrician did not see Zoe’s eyes crossing, but thankfully when I brought it up, she took us seriously and recommended that we take her to an ophthalmologist.

    I look forward to reading more of the story and hope that all goes well with you and Conner and the rest of your family.

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  2. Thank you for sharing part 1 of your story (and those amazingly cute photos! What a sweet little man!) I appreciate you telling us so clearly what to watch for. My daughter’s eyes tear up and she doesn’t like the sun … we’ve had an optometrist check her out and all seems fine … but I will do a follow up just in case. (I’m a regular visitor here because my son has lazy eye – accomodative esotropia – and the pattern of thinking “is something wrong? but everyone says it’s ok …. but I wonder if something is not right ….” that is SO familiar to me.

    thanks for sharing.

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  3. Hi Stacie,
    Thank you for sharing Conner’s story so far. You are so right – PAEDIATRICIANS are not specialists in eyes. Kaelen our 22mth old has been diagnosed with bilateral congenital glaucoma, has corneal scarring and optical nerve damage. Congenital glaucoma is a very dangerous disease and a SILENT one. Of course when you know the top 5 signs of congenital glaucoma you feel like a bad mother – why didn’t I know that!! Why didn’t the doctors say anything etc, etc.. Kaelen in 18mths had been in front of 4 GP’s, Pharmacy staff, Paediatricians and Health department nurses (a large group of medical fraternity) and not one of them said anything indicative to us. Instead, they all commented on his beautiful big blue eyes (which run in my family!!). I now hate hearing that and am honest when people enquire why that makes me sad… I tell them what is wrong with him so that when they look at their own children, their friends children, their grand children etc if they see the signs, they can act…
    Thank you for sharing and I too, welcome contact from anyone who would like to share – frassetto@bigpond.com.

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  4. Hi,
    Thanks for your blog. My son is 8 weeks old today. From about two weeks after his birth I noticed that occasionally his eyes bulged, meaning you can see the white part above his eye. My pediatrician told me that its’s normal, but something kept telling me otherwise. I have taken to google and am concerned that he may have glaucoma. I am taking him to an optomolgist next week, I hope all is well, but if it is not hopefully it is soon enough to catch it. How is your son?

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    • Hi Cheryl,
      Have been thinking of you. How did you go with your opthamologist trip? What was the diagnosis?

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  5. Hi Cheryl,
    I am glad to hear that you are going to an opthamlogist. They will be able to very quickly let you know if your son has congenital glaucoma.
    Our son, Kaelen is heading towards the end of his treatment for now. It is such a blessing as the past 6 months have been pure hell for us. At this stage his surgeon has deemed his surgery a success and his pressures are now 6 and 13 – a very far cry from the 34 and 39 we started with. So, we are wearing glasses full time, no eye drop follow ups required at this stage and hoping to have 3 mthly pressure checks.
    Please let me know how you get on next week. Where abouts do you live?

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  6. Hi Stacie and Anita,

    This is Rashmi from India. My son (now 7 month old) was diagonised with congenital glaucoma in his 3rd month and has had a surgery in his left eye….

    I have been googling so much about congenital glaucoma in whatever free time i get…though my son’s surgery is over, i have sooo many doubts coming in my mind all the time…..the more and more i read congenital glaucoma stuff on the internet, the more and more doubts i get, leading to frustration (why did god choose my kid for this disease??), guilt, etc..

    Hey i have so many doubts and am happy to get in touch with you guys (happy ?!?!?)

    1) My son has been scratching and plucking his eyes so much since birth that i have been holding his hands all the time without leaving his hands free…..has this happened to your kids? the doctors (even the opthamologist) says that i need not worry about this as it is common for kids to scratch / touch their eyes unintentionally while playing..

    2) Do you know any examples of people who have had bilateral congenital glaucoma and have lived a whole life with manageable eye sight….??

    Hey i too welcome parents of glaucoma affected kids to contact me at: rashmi.karthick@gmail.com

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    • Hello I am from India .My daughter is now 9 yrs old diagoned with Glaucoma in her right eye at 5 yrs age.She has had it as a side effect of cataract surgery performed at under 2 months age.You can keep in touch with me if you want as we have a long journey ahead .My id is ssingh77@gmail.com.

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  7. Hi Rashmi,
    I apologise for the delay in returning your email. I am more than happy to keep in touch and check on your son’s progress.
    Please take heart. It is a life long journey that we are embarking on and it is not an easy one. We will all have moments of great strength and then moments of self loathing, doubt and grief.
    To answer your initial questions,
    1. We have had no scratching of the eyes as such but Kaelen did rub his eyes and complain they were sore quite alot. I would not worry at this stage about the scratching. It may be worth asking your son if his eyes are sore though.
    2. Due to the scarcity of groups particularly dealing with bilateral congenital glaucoma, I have not been able to find anyone to contact to get any glimmer of hope for our son’s future sight journey. I wish there was someone I could track down and ask all the questions to, because then I would be in a better place with this horrible condition.
    My major piece of heart for you is that the doctors have been able to diagnose your son early (7mths) before too much damage has been done. Our son, Kaelen wasn’t diagnosed until 19mths. Broke our hearts.!!
    What have the doctors/surgeons told you your son’s prognosis is and what operations has he had so far?
    Thinking of you, please keep in touch.
    Ciao for now,
    Anita

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  8. Rashmi,
    I failed to mention that Kaelen’s surgeon who performed his trabeculectomy’s and trabeculotomy’s is from India – Dr Ravi Thomas. He is an amazing man and we could not have come this far without him. He is now relocated to Brisbane, Australia (luckily for us) but I know he is still travelling back to india regularly. I am unsure if he is operating there though. He is ranked in the top 4 of the world’s Paediatric Opthamologists and is a leading expert in congenital glaucoma.

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  9. Hello everyone,
    My daughter, Maria, age 22, was born with infantile glaucoma. Has done surgeries, including laser, and on drops. Drops now do not seem to be working, we go in for consultation next week. Is there anyone who is older (20’s) who has this problem & how have they and are they dealing with it?
    Thanks, Madelyn

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  10. Hello Stacie,
    Thank you for posting your personal experience with congenital glaucoma. Your son Conner is an adorable child and his pictures remind me very much of myself at that age. I am an adult living with congenital glaucoma myself complete with one eye larger than the other. I have started the Congenital Glaucoma Network (http://congenitalglaucoma.ning.com/) to facilitate discussion, provide support, and promote awareness of congenital and childhood glaucoma. I encourage you and your readers to join our network. I hope to see you there. Best wishes!

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  11. Hello everyone!I;m glad of finding this information! Finally I could relate from people that have the same condition as I (Glaucoma on Left side of eye). I’m 19 years old and God has helped me throughout my condition all these years. I’m the only one from my family to ever have this, but I praise God he has never left me alone! without him I would be nothing; I would have probably be sad and mad, however, this condition has helped me live life to the fullest! I’m always smiling and never stop. If you are passing through this condition; don’t worry, just remember no one is perfect! You will manage to be a better person in life! ๐Ÿ˜€
    Thanks to you all for the great information!

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    • A questiooon hehe do you have like a lazy eye due to the other surgeries? I have one but I’m afraid of having another surgery

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  12. Thank you for sharing your story. I have a 3mo old little boy and his right eye is smaller than the left. No one else really notices it but I am with him 24/7 and it bothers me. I am definitely going to bring it up to him doc so she can recommend a good eye doc. Thanks again!

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  13. My daughter who is 3 was seen today by an opthamologist.. Orginally for a cyst that worried me on her eye. Which can be taken off, the doctor wasn’t worried about that.. BUT he said that both her eyes are very enlarged. He looked at her nerves and said they look very healthy but hes alarmed by the size of the coloring in her eyes. I just always thought she had big beautiful blue eyes. He is referring her to a glaucoma specialist, which she is seeing at the end of December.. I was wondering if you knew the chances of her having good eye sight in the future… As of right now her nerves look great… Does that mean we caught it early enough for her to have a good prognosses? I’m just so new to this and have so many questions. I want whats best for my little girl.. I want her to be able to see the world as she grows. To make matters worse I’m thinking her little sister who just turned one might have the same issue… Her eyes too are enlarged. Any advice and knowledge on this would be greatly appreciated..

    Thank you

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  14. Thank you for sharing. We have an EUA right around the corner and here I am on the web searching for success stories. Children with CG don’t often have success stories because it’s on going. But I find myself still looking for something.

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  15. I just wanted to share my story…a success, a CG “survivor”… I’m 26 years old, had my diagnosis at around 2 months old and first surgery at 4 months… I’ve had to have several surguries following the initial one to correct a lazy eye that was a side effect of the surgery, but other than that (it’s been 15 years since my last surgery)… I have fairly decent vision (require only one contact in one eye) and live a totally normal life. I just wanted to share so that those of you with children born with CG can get a glimpse of what life is like for me now ๐Ÿ™‚ I have three beautiful children with no vision problems and get annual exams to make sure my pressure stays under control. so far, so good ๐Ÿ™‚

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    • When did you have the surgery to correct the lazy eye? I need to have one because I hate that eye but I’m a little traumatized with the idea of having one more surgery ๐Ÿ˜ฆ was it bad?

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  16. Ive been through the same thing many days of trying to find out what is the cause of my 4 month old left eye being a bit smaller than the right. Peditriatians are not doctors and bacause I read this am very much concerned about my sons eye and will make an oppointment to an eye doctor right away…..Thanks this helped alot!!!!

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  17. Hi there, my daughter who is now 9 years old was diagnosed with congenital glaucoma, when she was 5 years old, she uses eye drops twice daily for the rest of her life and wears glasses she also wore eye patches for a couple of years, her sight was extremely poor as she could only see a few feet in front of her it has improved but it will never be perfect. it has never affected her through school she is doing really well, I think she just adjusted to things differently before she was diagnosed, as I can remember when she got her first glasses and she said dad I can see the numbers on the taxi I didn’t know they had numbers, also she saw an aeroplane in the sky for the first time it was a very emotional time.

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  18. I don’t know what to do because I have CG and after all I now have a lazy eye and I don’t really want to habe a surgery because I’m a little traumatized with the idea of having another one ๐Ÿ˜ฆ

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  19. Hi Staici,
    My son was 6 month when his grandba told me that baby has one eye bigger than the other. I never notices. Now he is 9 month old and it seem like his right eye is a little bigger than hid left. my mother in law keep saying it’s normal and she also was saying it’s genadic, my husband my son’s dad has it and her two other boys. she said that it went away by itself with no treatment I don’t believe her. I think I should take my son to get checked with an eye dr. after I read your post. Thank you a lot for posting your story.

    Like

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