Mum fighting for baby Frankie: 'She doesn’t need to be on waiting lists'

Mum of Frankie, a baby with Down syndrome, talks to Helen O'Callaghan about fighting every step of the way for what Frankie needs

Seventeen-month-old Frankie is in her high chair, bopping away to music and occasionally throwing her toothbrush at her mother.

However, when Tallaght, Dublin-based Sarah King was 14 weeks pregnant with Frankie, she and husband William were told their baby would most likely die in the womb or shortly after birth.

“The doctors were adamant they didn’t think she’d survive. She either had a chromosome disorder or a heart defect or both,” says Sarah, who has two other children, Liam, four and Leah, three.

At around 18 weeks, Sarah went for amniocentesis —which involves withdrawal of a small amount of fluid from around the baby to examine the chromosomes.

“I was told the risks are usually one in five but mine were higher because of the baby’s position and also I had fibroids and some fat around my stomach. So I said we’re not doing the test. I wanted to give my baby the best chance, whether she lived or died after birth. Otherwise, I’d never know what was meant to be.”

Explaining that the risks could be contained if Sarah had the test at a later stage, Sarah opted to do it at 21 weeks. Ten days later she learned Frankie had Down syndrome.

I’ll never forget that day. It was beautiful. It didn’t bother me that she had Down syndrome. I had prayed for this diagnosis. They had told me Edwards syndrome and she’d have had no chance of survival. All I wanted was a baby who was going to live.

While she knew there was a long road ahead, Sarah said she “didn’t have a clue” about the challenges children with Down syndrome face.

Frankie spent almost three months in hospital prior to having heart surgery at five months. “The heart defect was repaired but she’ll have to be constantly monitored. Further surgery isn’t ruled out.”

That they have to fight every step of the way for what Frankie needs isn’t good enough, says Sarah. “She’s vulnerable anyway, she doesn’t need to be on waiting lists.”

She’s very grateful to have Down Syndrome Ireland “in our corner” and she’s doing their 21-day fundraising challenge, which asks people to run, jog, walk, cycle or swim a distance of 100km in 21 days. “I’ll walk or go on the bike. I’m going to cover the 100km anyway I can.”

And all because of Frankie. “Every day she’s here, we’re blessed,” says Sarah.

downsyndrome.ie