AT BIRTH I JUST COULDN’T LOOK AT MY DOWN’S SYNDROME DAUGHTER... NOW I REALISE WHAT A SPECIAL GIFT SHE IS
On World Down’s Syndrome Day, Anne Donaghy, chief executive of Mid and East Antrim Borough Council, talks frankly to Victoria Leonard about the emotional fall-out from the birth of her daughter Andrea — which led to the breakdown of her marriage — and how
The first year or two I saw Down’s Syndrome first ... now, I see Andrea first, and then Down’s
As Anne Donaghy cradles her adorable five-year-old daughter Andrea in her arms, it is clear the youngster is the apple of her mother’s eye.
The little girl, dressed in a floaty pink dress with matching sparkly shoes, runs around the offices of Mid and East Antrim Borough Council, charming everyone she meets.
Council chief executive Anne (47) keeps a watchful eye. It’s hard to believe that Anne was once told her endearing child would be “your cross for the rest of your life”.
Andrea, Anne’s youngest child and only daughter, has Down’s Syndrome — a diagnosis which meant Anne couldn’t bring herself to look at her newborn for the first five days of her life.
Speaking publicly for the first time, the mum-of-two told the Belfast Telegraph of her fight to come to terms with her daughter’s condition, and the impact it has had on her family life.
“I had a blood test, and the consultant said there was a one in 10 chance that I would have a child with Down’s Syndrome,” she recalls.
“I thought, ‘That’s a 10% chance, that should be okay’. Naively, I sailed on through the pregnancy.
“When my daughter was born I had a C-section. They said she had Down’s Syndrome.
“In my head I was screaming and crying my eyes out, but in reality there were no tears or noise. I didn’t look at Andrea for five days, I was too afraid. I absolutely was not prepared at all.
“For the first time in my life I was faced with something I couldn’t control. When I first saw her it was like a whole outof-body experience. It took me a long time — I’ve went through a phase of getting to where I am now with Andrea.”
Anne, who was chief executive of the former Ballymena Borough Council at the time, says she was “shocked” by one healthcare worker’s reaction.
“They said to me: ‘You’ve a wee baby with Down’s Syndrome, that’s your focus now, you will not be able to do your job’, she recalls.
“I felt I had worked all my life for my career, I love my job. I was one of the early women to get a chief executive’s post in a very male-orientated environment. I wonder would that have been said to a man?
“I replied: ‘That’s where you’re wrong, I will be doing my job’ and I walked out of that hospital.”
Moments later, a distressing encounter vividly illustrated society’s prejudice towards Down’s Syndrome.
“I had Andrea on Good Friday, April 6, and this nurse that I knew said to me as I was leaving the hospital, ‘A wee Down’s Anne? And on Good Friday? Well, that’s your cross for the rest of your life’.
“I walked out of the hospital and I said, ‘Well, I will carry it, but it will not be my cross.
“‘I’m going to rear my child, I’m going to do my job, and I’m going to change this cross into a beacon’.”
Anne — who is also mum to nine-year-old John — admits she initially would have “swapped” Andrea for a “normal” child.
“Now I wouldn’t, but it took a lot for me. You land home with this baby with a disability and you’re going, ‘What do I do?’ You have health visitors telling you everything’s in the lower quartile, and there was no support for me.
“She has extremely low muscle tone, very poor hearing, very poor sight.
“She would have had a lot of pneumonia when she was young, because their wee pipes are very small.
“Many times I would have just went from work to hospital.
“I cried every single day coming to work and going home from work the first year after she was born.”
The stress of the situation led to the breakdown of Anne’s 21year marriage to Martin.
“He’s a great father, but Marty and I basically parted our ways because of pressure and different views over Andrea,” she says.
“I am separated, but I see and speak to my husband every day. Our children are our number one priority.”
Anne continues: “I would like to see a wrap-around service, not only for children with Down’s Syndrome, but for all children with disabilities.
“I would like to see the family unit supported because my family had a lot to deal with. A child with disability puts such pressure on the family.
“The first year or two I saw Down’s Syndrome first and Andrea after.
“Now, I see Andrea first and then Down’s Syndrome as her condition.”
Three weeks after her daughter’s birth, Anne attended the council’s monthly meeting.
“I walked into the council chamber and they all stood up and clapped. There were no words needed.
“Councillor Billy Ashe, my chairman at the time, said to me later, ‘Anne, do you realise with Andrea your job is different? Your job is to find her talent, and stop looking for her to be measured against the norm’. “That gave me a lot of hope.” Anne was adamant that Andrea would follow in her brother’s footsteps by attending the mainstream Laghey Primary School.
However, she had to fight for Andrea to be given more hours each week with a special classroom assistant.
“Andrea has Down’s Syndrome, she’s doubly incontinent, she has hearing aids for both
ears, sight issues, she can’t talk, she signs a bit — and they gave her five hours a week.
“I knew how to fight — I have now got Andrea 21 hours and she’s flying at school.
“But it wasn’t made easy.” Anne would like to see a rapid referral integrated pathway to bring together services for people with Down’s Syndrome.
“In my life there are so many appointments and it’s not joined up,” she explains.
“My expectation was that I would ring up a social worker and everything would come around me. Definitely not.
“I have spent the last five years fighting for her education, hearing, sight, speech therapy.”
Anne is also constantly faced with society’s prejudice, she says.
“A typical comment would be, ‘I know a child and he is great, working in a hotel or supermarket stacking shelves, collecting trolleys or washing dishes’,” she explains.
“My aspirations for Andrea, like any mummy, are higher than that.
“I always just say, ‘I am enjoying Andrea for what she is now, and my job is to find her talent and I don’t know where her talent will take her in life’. I think Andrea will do something amazing. Andrea has so much to give.”
Anne admits she finds it “very hurtful” to read about countries like Iceland, where most babies with Down’s Syndrome are aborted.
“I could not have done that. “It’s a great loss to any society not to have Down’s Syndrome.
“I have come up with this thing in my head: ‘Down’s Syndrome are downright perfect’ because to me Andrea is perfect. “The world would not be the same for me without my Andrea.”
Anne plans to write a book based on her own experiences in a bid to help other parents in a similar situation.
“It will be about how you can live your life and support your family while still dealing with a child with Down’s Syndrome.
“It’s not a book that I’m going to sell.
“At the very least I would circulate it through the Down’s Syndrome Association. I have so much to tell, and I wish somebody had been able to tell me it.”
The council boss, a disability champion with children’s special needs charity Sólás, intends to use her public profile to “be a champion to really try to improve services for disability”.
“Parents have enough on their plates — emotionally adjusting and dealing with a child that has a disability — without having to fight,” she continues.
“I will use my profile, my experience, my connections, my education, to actually start to do something.
“I would never wish anybody to have a child with a disability, but a world without Down’s Syndrome is a poorer world.”
She is now taking life with Andrea one day at a time.
“With disability and Down’s Syndrome you can’t plan too far ahead.
“As a parent you think of all the milestones: the first day of school, the 11-plus, big school, university, marriage, their first car. When you have a child with disability you have got to find your own milestones.
“I can’t wait until Andrea talks, until Andrea gets out of nappies, until she can sit down like a normal child and have a meal. They are my milestones for now. But I have ambitions for her too.”
Anne wishes she could share the knowledge she has gained with her former self.
“If I had to do it again, I would not have cried the tears I cried.
“I would say, ‘Anne, you are going forward with this child’.
“I just don’t think people know what Down’s Syndrome really is. They are the most wonderful human beings in the whole world.
“There is no hatred in Andrea’s heart at all, no malice, there never will be.
“How amazing to have a human being like that in your life.”