16-month old Zara Aylward, who has been waiting for a life-saving operation on her brain from Temple Street Hospital, has undergone the surgery at Great Ormonde Street Hospital in the UK with great success.
Zara had been on a waiting list for surgery at home but as she was getting older her condition was deteriorating, and she had still received no date for her operation.
Her desperate parents, Clodagh and Kevin of Glenmore in County Kilkenny, in a bid to spur the HSE into setting a date for the surgery, contacted the local media in Kilkenny and Waterford in an attempt to heighten awareness of Zara’s life-threatening disorder.
And although nothing was done by the authorities in response to their plea, the public came out in their droves to support a fund that was established to fund the operation in the UK.
Speaking to the Kilkenny Advertiser this morning from Great Ormonde Street, Clodagh Aylward was ecstatic about the success of the operation which took place on Wednesday at 9am.
“She was in from 8.45am to 3.45pm and I did some ironing and washing while it was on-going to try and take my mind off things,” she said. “We have taken an apartment opposite the hospital and so they said that they would call us when they had news. They came out of the surgery and spoke to us at 1.10pm and said it was going really well. We finally got to see her at 3.45pm. She is in great form now. She woke up this morning at 2.50am and I was with her. Kevin had gone back to get some sleep and her first word was daddy! Then she asked for her brothers Aaron and Eoin. She was in great form giving ‘high fives’! She stayed awake until the morning and fell asleep again. I am just so happy. She has lots of wires and drains coming out of her but at least she is fine.”
Clodagh is delighted that the surgery is completed, however she is disappointed that her efforts to highlight the plight of what she discovered was of many parents did not come to anything within the HSE.
“I thought that this might help them see how distressing it is for parents living with a child who has this condition and are just waiting for a slot. But there are only two surgeries carried out a month in this country and 26 children waiting. And although Clodagh is now off their list, another child will join in her place and be suffering like we have unless something is done.
Zara had a relatively rare skull condition called coronal craniosyntosis, which means that her skull has grown incorrectly since she was in the womb. Not having surgery was not an option for her as her brain was not growing on one side of her head, and the other side was affecting her eye, which is now temporarily blind as a result of the growth.
“She has a problem now with her eye which is very swollen and she will have to wear glasses and a patch to retrain the eye to see again as it has been affected by the incorrect growth of her skull, but this is all very treatable. We are looking forward from now on. She will be out of hospital on Sunday and then we return in six week’s time for a check up,” said Clodagh.
Zara’s story has touched so many people’s lives and Clodagh is extremely grateful for everyone’s support. The operation will cost in the region of £35,000 sterling and amazingly the fund raised all of this money.
“We didn’t ask for any of this but we are so appreciative to everyone who helped us in any way. Right now I feel the same as I did the day that Zara was born. I am so happy It’s like I’ve just had her all over again,” said a delighted Clodagh.
