Glaucoma Association Forum

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View Topic "Congenital glaucoma"

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Posted By: kelly1983
Total Posts: 2
Joined Date: 1 Oct 2010
Thought this might help some one who has just descovered that there baby has Glaucoma.
I was 16 years old and expecting my first baby, my pregnancy was normall I had no problems and no reason to think any thing was wrong.
I went into labour at 37 week and after 6 hours in labour i gave birth to a little boy,I was quit drowsey has I had lots of pain killers but about 5 min after he was born the midwifes were acting strange and then they said that there was a problem with the babies eye.
My community midwife turned up not long after and she told me my baby was blind, I was devistated and in shock.
The next day my baby was sent to see a specialist in Sheffield were he was diagnoised who Glaucoma and i was told I need to take him to London Moorfields eye hospital for an operation, I just cryed.
Two weeks passed and we were in London meeting with Prof Khaw he told me my son needed a operation on both eyes to make and opening for the fluid to drain, I just expected the one operation then every thing would be ok.
The one thing nobody told me was that babys heal very quickly and with Glaucome this is not good has it make scare tissue which blocks the opening that they made in the operation, meaning that he need lots of drops to stop scaring and the pressure from going up, my son also need operations to remove scare tissue and check pressure.
My son also had lots of ulcers on this corneas causing him lots of pain.
When he was 5 months his pressure was too low which is worse then it being high so we were back in london for another op were they put some jelly in the eye,we then went home two days later my son was very ill being sick constantle in the local hospital they thought it could be meningitus we were rushed to London at 11 o clock on a sunday Prof Khaw came to see him, the next day he operated cas the pressure was very high.
For the next 7 weeks we were up and down to london some times spending a week or more there.
He was very ill. When he was ! yr old we were told the only option was a tube implant wich scared me has 10 years ago this was and still is a big op, my son was in the op for 4 hours but it work his pressure was stable for a very long time.
When my son was a bit older he also had a cornal graft on both eyes his right one was done first wich failed he recently had his left done and has made alot of diffrence to him.
My son his now 11 yrshe goes to a normall school and dispite his sight and all the problems he has had is really out going and if you saw him in the play ground you would not know he was blind.
Babies born with Glaucome need lots of ops my son has had 50 or more some 10 which were very big one and lots of little ones he does cause lots of pain and drops needed daily.
Glaucoma is a long term illness and not just a blindness we can only hope that a cure will be found.
Has a parent it is very hard watching your tiny baby go through alots of ops and in pain and theres nothing you can do, but you learn to be strong because its not you going throught this but your child who needs you to be very strong for them.
When i found out i was pregnant again my heart sunk i was told that there would be a 1 in 4 chance of the child having it, so thats what i expected, I now have 5 children but only my oldest has Glaucoma, so dont let it scare you,I have seen familys with more than one child with glaucoma.
I would just like to say i could not have got through these times with out the staff at Moorfield espcially Prof Khaw, Mally,Sir Nero, Jackie Martin and all the nurse
Posted : 1 Oct 2010
Posted By: Bailey
Total Posts: 302
Joined Date: 17 Mar 2009
Hi Kelly,

I think you and your little boy are exceptionally brave. Glaucoma is a nasty disease, and when I feel sorry for myself, I have to remind myself that I am nearly 54 & have had a pretty good life so far.

Far too much media attention, and money from the NHS, is thrown towards self inflicted ailments, and terrible illnesses like congenital glaucoma are never made public, I don't think most people know about these things.

You are so young, and have been through so much, I truly wish you & your family, and especially your little boy, who has fought against all odds, lots of happiness for the future.

love Bailey xx
Posted : 1 Oct 2010
Posted By: kelly1983
Total Posts: 2
Joined Date: 1 Oct 2010
Hi
Thanks for your reply.
Posted : 1 Oct 2010
Posted By: krisaustralia
Total Posts: 25
Joined Date: 18 Jul 2009
Thanks for sharing Kelly. I was born with cataracts and a number of other eye conditions which required operations to remove my lenses and the cataracts when I was an infant and have had more troubles as an adult - now 32. Yr son is very lucky to have a loving mum to help him through and lead a normal life. Was very difficult for my mother also when I was a baby - dealing with the medical system and some of the morons in it is quite a draining thing.

Great to hear yr boy is enjoying life and I hope hs eyes dont give him any further dramas in the future.

All the best
Posted : 1 Oct 2010

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