A local family is to raise money for a charity which has helped it through a ‘roller coaster’ year to mark their daughter’s first birthday.
Rosa Donaghy, who will turn one on June 10, was born with a heart defect and had major surgery to correct it earlier this year.
Mum Michelle found out that her only daughter had the serious heart defect during a foetal scan.
Atrioventricular septal defect (AVSD) is a heart defect in which there are holes between the chambers of the right and left sides of the heart and the valves that control the flow of blood between these chambers may not be formed correctly.
“With this particular heart condition there is a 70 per cent chance our baby would have Down’s Syndrome and we were offered testing to confirm this,” Michelle explained.
“I opted for a private non-invasive test rather than amniocentesis and we got that for our own peace of mind.”
It was confirmed on World Down’s Syndrome Day that Rosa would be born with the condition.
“At that stage the Down’s Syndrome was a bigger thing than the heart condition. We knew that the heart condition could be fixed and the Down’s Syndrome was lifelong.”
“As the weeks went on, the heart condition became more serious. We were told she would be fine to begin with and the symptoms would not kick in straight away.
“Initially we were told the surgery would take place in London when Rosa was around six months, but she would need to be a certain weight before she could have it.”
Michelle and her husband, Kenny, took each day at a time and spent the rest of the pregnancy planning for their daughter’s surgery, as they had to think about the logistics for their four other children.
They were also put in contact with the Children’s Heartbeat Trust, who offer support to the families of children with heart conditions.
“Rosa was born very small, but she was really well. She was put on medication and we had to focus on getting her to put on weight for the surgery. Her heart was working so hard, she was unable to put on weight and eventually they had to put in a tube for feeds.”
Michelle also continued to breastfeed her daughter, as she had done so with all of her children and she felt it was important for her to have the same bond with Rosa.
The family learned a short time after Rosa was born that her surgery would take place in Dublin and it was scheduled for Christmas week.
However, heartbreakingly Rosa contracted a virus two days before she was due to have the surgery and it had to be rescheduled.
She eventually underwent the six hour procedure in February.
“Because she was that bit older her recovery was slower. Rosa was kept sedated and on a ventilator in ICU for four days after the surgery and the doctors just took their time gradually taking her off it,” Michelle said.
“The surgical team were delighted with how well it all went. For us as a family it felt like there was such a weight off our shoulders and we felt we could finally move on.”
Throughout the whole journey the entire family received support from the Children’s Heartbeat Trust.
The charity also offered the family counselling to ‘work through any issues about Rosa’s health.’
“They provided us with emotional support and put us in touch with other parents whose children have heart conditions. They also hold social events for parents and financial support, because it is a huge strain when your child is in hospital so far away from home.”
Michelle said the family decided to do something for Rosa’s birthday to give something back to the charity, to thank them for their support.
“We decided to raise money in lieu of presents for Rosa. She has everything she needs and we have asked anyone who would be buying her something, or anyone who would like to support the charity, to make a small donation to the Heartbeat Trust.”
Michelle said her daughter is now the picture of health and the family are able to enjoy her.
“She is putting on weight, has gone up a wee clothes size and is doing so well developmentally.”
“Now the heart surgery is over we feel really relieved and at peace. We feel like we can finally enjoy our wee baby.
Before the surgery, we couldn’t take her anywhere as Rosa had to be kept in isolation before and after the procedure to make sure she didn’t catch anything.
“We were only able to start taking her out and about in April and now she is going to wee classes and taking part in so many activities.”
To donate visit: www.justgiving.com/fundraising/rosa-donaghey