By Paul O’Donovan
As we said last week, most of us are fortunate enough to wake up every day and go about our daily business as normal. We look around us and see the beauty of the world. We see our family, we see our friends. We look around our house, we look at the food we are going to eat, we go out for a walk and see the fields, the trees and the sky above us. When we get home, we sit down and relax and can watch the television. These are all things most of us take for granted.
But as we described last week, for baby Áine Boyhan Galligan from Bigwood in Castlepollard, it is a different story.
Áine is just six months old but suffers from a very rare eye condition called Congenital Bilateral Cataracts. To suffer from this ailment in one eye is very rare, but to have both eyes affected is extremely rare. However, that is the condition affecting little Áine as she begins her life.
At their home in Bigwood, Castlepollard, Áine’s parents, Margaret and Ciaran Boyhan Galligan, spoke to Topic about the distressing and rare eye condition Áine suffers from, the difficulties they have all had to deal with to date, and the future prospects for Áine gaining some sight. They also spoke about the great support they have received from their neighbours and the local community.
Margaret and Ciaran, who have two other children, Alannah (4) and Sean (2), revealed how they discovered that their baby daughter Áine had complications with her sight.
Margaret explained, “Áine was born last August and she was fine and then, at her six-week check up, the GP couldn’t detect any red eye reflexes, which is what everyone needs in order to see. So then Áine was referred to an opthalmologist in Mullingar who confirmed that she had Congenital Bilateral Cataracts.
“From there, Áine was referred on to Our Lady’s Hosptial for Sick Children, Crumlin, in Dublin, for further tests. In Crumlin, Dr. Brosnahan said that he would perform surgery in both her eyes to fit intraocular lens. When we heard that, we were shocked.
TOTALLY UNEXPECTED
We didn’t know what it all meant and it was totally unexpected. That was on the Monday and Áine had surgery on her first eye that Thursday and then on her second eye the next Thursday. Since then, we have been up and down to Dublin every week for check ups,” said Áine.
Áine was then referred to the National Council for the Blind of Ireland and to the Early Intervention Team in Mullingar.
Even though she has no sight at present, Áine has been wearing specially designed glasses. She is wearing these to allow the light to focus onto the retinas of her eyes in the hope of possibly stimulating her optic nerves. Her worried parents don’t know if that will happen or not.
“Unfortunately, her eyes rejected the lenses, so Áine h as had more surgery in late December. Dr Brosnahan then cleared the backs of her eyes and made bigger holes in the capsules of her eyes to try and let more light in. It is very rare for a child to have this problem in one eye and even rarer to have it in both eyes. Apart from her eyes, Áine is a perfectly healthy baby in every other way. We just have to wait at the moment and hopefully, something will improve,” said Ciaran.
Both Margaret and Ciaran are most thankful for the professional support they have received from the national organisations that deal with this problem.
“Thanks to the professional support of the National Council for the Blind of Ireland and the Early Intervention Team in Mullingar, we are trying to keep life as normal as possible for Áine. We are trying to have a safe upbringing for her and still be aware that life will be different for her.
“Áine will have her glasses changed every six to eight weeks. It will be a process of trial and error to get the lenses stronger and correct as we go along. Hopefully, that might trigger off something positive, we just don’t know.
“There will be more surgery down the line, but at the moment it is one step at a time. She had five appointments last week alone,” said Margaret.
“To compound matters, Aine has an additional eye condition called nystagmus. Her eyes are constantly moving to and fro, even though the object she is looking at is still. Because the eye is shaking, the vision is blurred. This is as if a camera moves during a photograph, the picture would be blurred. Unfortunately, it appears there’s nothing that can be done to correct this condition. Even with surgery in the future being successful, once that nystagmus is there, there is no more can be can be done with that problem,” said Ciaran.
PROGRESS MUST BE MADE EARLY
Like any worrying situation like this, time is of the essence. “The first few years are vital for any child’s sight, and this is the time when most progress can be achieved at correcting any sight problems before the eyes fully develop at eight years of age. That’s why the doctor wanted to operate quickly. The longer it is left, the less chance she had of developing any sight in the future. If it gets over ten weeks, the chances of any sight developing is less and less,” added Ciaran.
To look at baby Áine, she seems a fine, friendly little girl, and you can see both her eyes looking out from behind her glasses. Because she is wearing glasses, it gives the impression that she has sight, but she hasn’t any sight at all, the experts say.
Obviously there is a great deal of expense on the Galligan family presently, as they are making numerous trips to Dublin and around the country for various appointments.
“A normal week could involve two trips to Dublin, to Our Lady’s Hospital for Sick Children in Crumlin, then Mullingar, Athlone, Clane or Cavan. Plus, we have the other ordinary check ups that babies have during their early months,” said Margaret.
NO CAUSE IDENTIFIED
What is even more frustrating for Margaret and Ciaran is that they have not found the cause of this condition yet.
“Generally there is a reason, but they haven’t found any reason yet, and all tests have come back clear. Maybe it is just a clash of genes between us, the parents, but then our other two children are fine. Áine’s sister and brother, Alannah and Sean, are very good to her and they both help her a lot, but it is just a waiting game for us at the moment,” said Ciaran. “The doctor has changed Áine’s glasses, the frames of which come from Italy, twice so far. As long as the retinas are working, he is hopeful something can be done, but the optic nerves would require surgery and that would be a big decision to be made down the line.
“It has not been ruled out that Áine will see, but her form of vision will never be top quality. Any vision she gets will always be blurred, but if she is able to see her brother and sister and able to play a bit, that is what we are hoping for at least,” said Ciaran.
Both Margaret and Ciaran have been delighted with the support they have received locally from family, neighbours, friends and the community in general.
“The neighbours have been brilliant, doing things for us in every way and minding our other two kids while we are travelling to Dublin and other appointments. People have come forward with prayers and holy water from wells and churches. They have been great,” said Ciaran.
BENEFIT NIGHT
To show their support for Margaret, Ciaran and baby Áine, the local community has organised a benefit night.
The benefit night will be held in Ringtown Community Centre on Friday, 27 February. There will be music on the night by Liam Fagan and guests, with food, refreshments and a bar and dancing from 9pm till 2am.
One of the local organisers, Thady Burke from Ringtown, said, “Everyone is contributing and doing something for free. Liam Fagan is providing the music, Ringtown are providing the hall, Damien Moran is supplying the tickets, and many local people have donated spot prizes for the night. We just want to help out Margaret and Ciaran and we feel it is a very worthy cause. People can contribute on the night and donate at the door or if they can’t come, they can donate at their local bank to the following account:” Iban:IE78BOFI90168527401402–BIC:BOFIIE2D.
For the moment, Margaret and Ciaran just wait, hope and pray that baby Áine will shortly gain the precious gift of sight.
