Hi all my daughter Niamh was born 21 weeks ago with congenital bilaterial cataracts when we were first told we were very unaware of what we were about to face and thought it would be a simple laser job in and out end of story as it is with adults. We couldn't have been more wrong, because of the light being unable to hit the eye the cataracts have to be removed before 6 weeks for the best results. So at 3 and 4 weeks old my daughter had surgery to remove her cataracts a week apart each, The fear I felt that I may lose my little girl was imense and I was a wreak but trying to be strong and optimistic for my other family members who were also struggling especially my mam. She responded well to her surgery and after weeks of 4 sets of 2hrly drops was supposed to have contact types lenses fitted asap after 16 weeks of making complaints and asking where were they we finally had an appointment. In the mean while Niamh developed glucoma in her right eye due to a drain being blocked and had to have further surgery to relieve the water that had built up and stretched her eye (it looked twice the size of the other eye and we had to bring it to the attention of the consultant as he left her 6 weeks with no appointment) we have since changed hospitals and consultant and she under went another general to check her glucoma pressure just last week which were fine, her new consultant then fitted her lenses striaght away and she is responding great to them. We have been told that she will always have very poor vision even with lenses/glasses. We have to try and think ahead about her educational needs, also our living accomadation etc as I want her to have the best life possible. If I could give any parent advice it would be to find what ever help and support you can in what ever form it comes as my friends haven't been there for me but through my family, husband and help group am coping with it all, and trust your instinct their your child and you know when something isn't right so keep pushing only the best will do!
So nice to see a group like this and would be interested in helping anyway I can I am in Wales and would be happy to do a Welsh group? let me know Tasha and Baby Niamh xxx
Hi Tasha That is the best advice i have heard someone else give (I am the Parley founder) Parents know their child better than anyone. If you are not happy with the support and medical service you have given then you have ti speak out, its so important. If it wasnt for me speaking out again like you due totto the ignorance of the medical profession then Abigail would have had to have an even larger operation due to a fault they made during the first one. Good luck with your future modern technology is always changing so in years to come there might be something new out there that will give her more sight Hold on to this thought
Please feel free to publicise Parley in Wales, I am trying to get sponsors and donations for Parley to send out marketing to people like yourselves to really promote it. PM me your addrewss and i will sort some out to keep you going for the time being.
I am so pleased you have found this forum helpful, makes me swell with pride that it is helping and supporting us parents xxx
How are you? I have sent your marketing stuff for Parley in the post today
Can i ask you whether you would be happy to tell your story how PArley ,has helped you (if we have) for some press editorial's please? Let me know if you are interested and i will send you the ladies email address to contact and she will tell you what she can do with yourstory!
She has specifically asked for parents stories of how we have helped to help promote Parley and maybe.....go on the tv!!!!!!