What A Difference A Day Makes: Sandy Kelly on daughter's early health issues

Sandy Kelly, right, with her daughter Barbara.

My daughter Barbara was born in 1981. At two weeks old, everything appeared ok. But when I brought her home, I witnessed what I thought were seizures.

I was familiar with these — my mother had passed away two years prior with a brain haemorrhage. She’d had her first haemorrhage eight years earlier, at 39. After surgery, she had epilepsy.

So with Barbara, I had a path worn to Sligo General Hospital. I told them I thought she was having seizures. 

They thought I was mad, said I was an over-anxious mother. They did an X-ray and saw a shadow over her brain. She was four weeks old. She was sent straight to Crumlin Hospital.

Very much like what happened with my mum, I went straightaway into getting-it-sorted mode, as opposed to panicking. Thankfully, I am able to deal with a situation before I allow myself any emotional distress. 

I was 16 when my mum had her haemorrhage and I learned then if you show composure and are ‘sensible’, doctors tend to talk to you more. That was the way back then.

What happened with my mum was sad and horrible, but it helped me see when my daughter — two years later — had a problem. 

Sometimes miracles and blessings hide. Sometimes the worst things that happened in my life turned out to serve me later, at a different stage.

From the beginning, I knew Barbara had a problem and that it was with her brain. I’ve kept a chart from Crumlin Hospital from when I sat in the cubicle with her. 

It’s a list of her seizures — how often she had them, and for a little baby it was horrendous. I kept it as a reminder of what she’d gone through.

They scanned her in Richmond Hospital. With my husband and Barbara, I walked along the same corridor I’d walked with my mother, which gave me a jolt. 

After the scan, Barbara was kept in Richmond. We were brought back to Crumlin, into an office very late at night, told she had a cyst on her brain, about one-third the size of her brain. 

It was growing, filling with fluid, so they had to operate immediately.

It was too risky to remove the cyst so they put in a shunt, to keep the cyst from doing any more damage, but at that point some damage was done.

Children are resilient, she was allowed out of hospital. I don’t know what came into my head but I brought her to the neurological hospital in Swansea where my mother had surgery.

I got in my car, went on the ferry, brought her straight to the surgeon — a very kind man — who’d operated on my mum. 

He examined Barbara, listened to my story, showed me what a shunt does — he’d put the same kind of shunt in my mother’s head. 

He assured me Richmond Hospital had done a wonderful job — he couldn’t have done better.

From that moment, I felt reassured Barbara had been looked after. And all we could do now was hope for the best, watch her grow, see what her journey would be, what challenges it would bring.

Country singer Sandy Kelly. Photo by Colin Gillen

When I got home, I went to visit my late sister, also named Barbara. 

I completely broke down within the comfort of her space and company. I allowed myself to grieve for what had happened. I wailed like a banshee.

The doctors couldn’t say whether Barbara would walk, talk, how long she’d live, what quality of life she’d have. 

I knew the best thing I could do for her was be strong. I found myself watching her grow, comparing her to children her age. 

There was no help back then, no handbook for rearing a child with special needs. I had no social worker.

She was a wonderful child. She has grown into a 43-year-old woman who has given us, as a family, a different set of values. We’re a very down-to-earth family.

She gives us the most wonderful hugs, she’s the kindest person. She’s a young woman, large in stature, and very challenging mentally and physically. 

This doesn’t mean we love her any less. I love her just as much as if she’d been born like any other girl.

I’m approaching my 71st birthday, Barbara her 44th — she’s going into all the problems older women have. 

I don’t know if her challenging behaviours are anything to do with menopause. Carers still don’t get the help they need from the system. 

Nor do women with special needs, to avail of all that’s out there for women now.

I wish for her that she was born like every other woman. I’d have loved for her to have an education, a relationship, children, all the things available to other young women. For her I wish that. 

For me personally, I’ve taken her as a mother and embraced her as somebody very special, as somebody from whom I’ve learned life lessons.

• Your Roots are Showing — Ireland’s Folk Conference at the Gleneagle INEC Arena, Killarney, for the first annual ‘Folk iN Fusion’, the official opening event for the 2025 conference, Tuesday, January 14, 7pm. 
• Folk iN Fusion brings together names including Sandy Kelly, Rhiannon Giddens, Liam Ó Maonlaí, Peter Rowan, Ron Block, Thomas Gabriel.