Glaucoma Association Forum

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View Topic "Glaaucoma in babies"

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Posted By: Nicbean
Total Posts: 13
Joined Date: 10 Jun 2009

Danidoyle it sure is a long road but i promise you one way or another they will get his pressures sorted/

 

We had the goniotomies performed first but they did not solve the raised pressure. Henry ended up having a joint trabeclectomy/lotomy.

 

Touch wood he has been fine since. we were at the hospital with him today (07/02/11) and his blebs are still working. I have also had another son now who is 10- weeks old and he has so far got no signs of it. I was told it was a 4-1 chance of him also having it.

 

I have been lucky as ive met some wonderful people who have helped us through. I would not change my little boy for the world now! Childrens blind society leader Wendy Sainsbury has been brilliant with us and we cant thank her enough.

 

If I can help in any way with anything, advice etc let me know.

Posted : 7 Feb 2011
Posted By: Nicbean
Total Posts: 13
Joined Date: 10 Jun 2009
Hi all im just saying if anyone is currently going through the difficulties of glaucoma in their baby i also am going through this. My son has so far had three goniotomys one in left eye and two in right eye. He is still not sorted and will likely need a trabeculectomy.

I would love to speak, help people or even seek advice myself from people who are at a more advanced stage than us to re assure us.

Nick
Posted : 10 Jun 2009
Posted By: clairebear
Total Posts: 3
Joined Date: 10 Jun 2009
Hi, I have only looked at this website today...been meaning to for a long time, but have put it off. I feel compelled to reply to your thread, I really hope my story can help you find the reassurance you long for with your son.

My name is Claire, I turned 30 in April, got married last year and I'm currently pregnant with my first child.

My parents were in exactly the same situation as you when I was diagnosed with congenital glaucoma in 1979, when I was 6 months old.

I had the same ops as your little boy, at Moorfield's Hospital in London under a surgeon called Mr Rice, I have since been told he pioneered the goniotomy surgery.
I know how lucky I am that my story is a happy one, but I have always been told over the years that it was catching it early that helped me.
I remember happy memories of my childhood, I have led a perfectly normal life, I drive a car and I am not as sensitive to light as I was as a baby.

My Ophthalmologist has referred me for some genetic counselling to find out the chances of my baby being born with it. I am hoping they are slim. unfortunately no tests were ever recorded of being carried out on me, but I'm hoping I will get somewhere with it.

I cannot imagine what you must be going through, my parents have told me about their experiences with me and the stress they were under. I only wish there was something like this then that they could have logged onto for reassurance and support.

I can only try my best to reassure you that things CAN turn out well and if there's anything I can help you or anyone else with I would be extremely happy to try.

Good luck and thinking of you and your son xxx
Posted : 10 Jun 2009
Posted By: clairebear
Total Posts: 3
Joined Date: 10 Jun 2009
PS I just read the other thread. I thought I had an early diagnosis at six months, I have always been told that being diagnosed early saved my sight. I am pleased to read they diagnosed your son early too.
I was always massively sensitive to light, I just wear sunglasses now when it's really sunny, I don't wear any prescription glasses.
Posted : 10 Jun 2009
Posted By: optimist
Total Posts: 77
Joined Date: 9 Dec 2008
Hi Clairebear
I do hope that Nicbean can get some comfort from what you have had to say. It is reasuring that children can grow up having a good life. I am pleased you took the time to tell your story, because all too often on sites like this only the negative side of things tend to get talked about.
Good luck and best wishes
Posted : 10 Jun 2009

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