Couple with Down syndrome fights for parenting dream

Updated

A young couple with Down syndrome say they are ready for babies and marriage, despite the pleas from their concerned parents, who doubt their children are emotionally and physically ready.

All parents want to see their children marry happily and start a family. But when the couple has Down syndrome, the situation is profoundly complex.

Michael Cox and Taylor Anderton have been dating for almost two years and engaged for one.

The Queensland couple burst into the national spotlight in May when an ABC news video about their romance was viewed online more than 13 million times.

Michael and Taylor's parents have recognised the pair are happy together, but said they cannot support their dream of starting a family.

"Taylor and Michael want to get married and have children and that makes me feel very worried, apprehensive and concerned," Taylor's mother, Catherine Musk, told Australian Story.

"It's not going to happen; it can't happen."

The parents have raised their children to believe they can achieve their dreams, but now they worry they have fostered unrealistic expectations.

"I don't see parenthood being something that they're going to achieve, or really they probably should achieve," Michael's father Simon Cox said.

"It would be very difficult being a child whose parents both had Down syndrome and couldn't have a job and couldn't drive a car and couldn't understand maths homework and those sorts of things."

Michael and Taylor have agreed to delay their wedding, but remain determined to eventually have children.

"We want to have four kids," Michael said.

"We're going to have three daughters and one son.

"It's not that hard to have a kid. I know that some people say it's all about hard work but it's not — it's all about love and compassion that you have for your child."

'Their bodies, their choice'



Disability advocates said the decision on parenthood should rest with the couple.

Queensland Advocacy Incorporated director Michelle O'Flynn said people with disabilities were entitled to "bodily integrity".

Down syndrome Q and A

What is Down syndrome?

People with Down syndrome have 47 chromosomes in their cells instead of 46. They have an extra chromosome 21, which is why Down syndrome is also sometimes known as trisomy 21. It is unknown why this happens and it can occur across all ethnic and social groups.



How many people have Down syndrome?

One of every 700 to 900 babies born worldwide will have Down syndrome, although this number is lower in Australia with about 270 babies born each year with Down syndrome. About 70 per cent of babies with Down syndrome are born to mothers under 35.



What are the health issues?

Often lower general immunity which makes them more susceptible to infections and common illnesses. They also have a higher than average incidence of heart and respiratory conditions.



Can a couple with Down syndrome have children?

It is often difficult for a couple with Down syndrome to conceive a child due to low fertility in the male and lack of ovulation in the female and the likelihood of entering menopause early.



Will a couple with Down syndrome have a baby with Down syndrome?

If a woman with Down syndrome does fall pregnant, the chance of her having a child with Down syndrome or trisomy 21 is about 50-50. Data on instances is rare.



Source: Down Syndrome Australia, Down Syndrome Association Queensland and medical geneticist Dr Michael Gattas from Brisbane Genetics

"People … like Michael and Taylor are certainly entitled to the freedom to do with their bodies as they wish and that includes reproduction," she said.

"They have the same rights as everybody else. The fact that they have a disability doesn't diminish that."

Ms O'Flynn said rather than stand in the couple's way, it would be better to direct energy and resources into helping them fulfil their goal.

"We don't ask other parents in the community: 'are you good enough to raise your child?', and this shouldn't be prejudging how a person with an intellectual impairment parents their children," she said.

Feeling out of their depth, Michael and Taylor's families sought professional guidance on how to manage their fears and the couple's expectations.

"How can I stop it?" Ms Musk said.

"Do I go talk to a specialist, do I talk to a GP and see what the options are? I don't know — I don't know what our rights are and what her rights are."

Ms O'Flynn said the parents could attempt to secure an order for sterilisation.

"It is really something completely abhorrent to most of us," she said.

"I would say that they would have no chance of winning that because it's quite likely that Michael and Taylor would be proven to have capacity."

Medical geneticist Michael Gattas from Brisbane Genetics said the chances of a couple with Down syndrome falling pregnant were rare and he had never seen a case at his practice.

He said if a couple with Down syndrome were to fall pregnant, they would have about a 50-50 chance of having a child with Down syndrome.

Dr Gattas said data on the number of Down syndrome children born from parents who have the condition was slim.

Genetic Health Queensland director Julie McGaughran said if both parents had Down syndrome, there was a "high chance" in each pregnancy that a child will have Down syndrome.

Parents left to 'pick up the pieces'

Michael and Taylor said they were confident they would make great parents.

But their parents said they worried about the responsibility that would fall on them if Taylor and Michael did start a family.

"The advocates will tell us that we should just allow Michael and Taylor to have the same rights as their siblings and we just don't agree," Mr Cox said.

"They're not the ones picking up the pieces."



Taylor's stepfather Gavin Musk said it was likely he and the other parents would become the "grandparents playing a major role in the upbringing of that child".

"Then we've got to say: 'do we want to be in a position to do that?', because we are not going to be around forever to make those decisions," he said.

Michael and Taylor's parents said they did not want to force their children to change their plans.

"It's really important we don't get too panicky because I get frightened that the kids are going to feel like we're sitting on the other side of the fence," Michael's mother, Nikki Cox, said.

"I'm hoping that as they grow and as they learn they come to understand some of the things that we understand about the issue."

"Rather than be the ones to tell them: 'this is what's best for you', bring them along with us and see if we can get them to come to that same conclusion. So that decision is theirs — they own that then."

Never giving up on the dream

Michael's father said the families chose to talk to Australian Story as they confronted their dilemma to help others facing the same complex issues.

"If by telling the story we can, as the six of us, uncover things that we need to learn and if one other family can benefit from this experience it's going to be fabulous," Mr Cox said.

Michael and Taylor, however, are not ready to give up their dream.

"I know that their heart is in the right place, but being over-protective is strictly not on with your child, even if they have a disability or not," Michael said.

"I know that me and Taylor have the skills to be married and to start our own family."

Watch Australian Story's "Tough Love".

Topics: disabilities, human-interest, relationships, family-and-children, marriage, brisbane-4000

First posted