The joy of having a baby with Down syndrome

Ten months after giving birth to a baby with Down syndrome, Alison Preston wants to tell the world how much joy he has brought to her family.

Alison says her three older children – two girls aged ten and eight, and a five-year-old boy – just adore their little brother, Ethan.

“He brings so much joy to our family and also to our community; he’s a part of school and church and the broader community – he goes to lots of sporting events and he just brings joy wherever he goes. That’s a lovely thing about his nature – it happens to be joyful,” she tells Eternity.

Alison confesses that she went through a period of grieving after finding out during her pregnancy that her fourth baby was likely to have Down syndrome. As she said goodbye to the baby she had imagined coming into the family, she experienced a deep sense of peace after prayer and reflection.

“I know my journey isn’t a journey that everyone has, but I have had a deep sense of God’s peace, that peace beyond understanding, from very soon after learning of the diagnosis. I know that is from God,” says Alison. “I think it is a gift of God and I’m thankful for it.”

Alison took the unusual step for a Christian of having prenatal screening because she knew that, at age 41, she faced a high risk of having a baby with health issues such as Down syndrome.

“My thinking was ‘let’s find out and then the health professionals can care for myself and the baby the best as possible.’

“Part of the benefit of the early screening was I had a lot of time to read and prepare and learn. I spent a lot of time in prayerful reflection, thinking through a lot of things and offering it to God.”

Alison and her husband, Paul Scoullar, were immediately of one mind in deciding to go ahead with the pregnancy. They believe strongly that all people are made in the image of God.

“I always have had a deep sense of Ethan’s intrinsic value for who he is. And I see the image of God in him profoundly and I’m absolutely sure that God is going to use him in Ethan’s own unique way; and I also think it’s really important that people who get a diagnosis of Down syndrome during the pregnancy know what fantastic lives people can lead,” she says.

Alison Preston with her son Ethan

During her pregnancy, Alison found it hurtful when people said “I’m sorry” when she told them the news. The most helpful reactions, she says, were when people said: “’thank you for sharing that, how are you feeling about things?’ Just holding the thing and acknowledging that it’s significant but not making a judgment.”

Another experience Alison found painful before the birth was how medical staff, when introducing her to people, always mentioned the fact she was continuing with the pregnancy.

“It was distressing to realise how few parents in Australia, and particularly in Europe, choose to continue once they have a diagnosis. That surprised me and distresses me,” she says.

“Paul and I did spend some time looking at that and it was distressing to realise how few parents choose to accept a child with a disability of some kind and how that has become more and more the norm in a medical frame.

“I think there is a lot of work to be done in that space about upholding the dignity of people with disabilities and enabling parents to understand that there is so much joy in children and that there is a lot of support available.”

Alison and Paul took their time breaking the news to their three other children because they didn’t want them to be anxious. But they found them very “embracing.”

“We said, ‘our little baby might be a bit different and a bit slow to talk or walk.’ My seven-year-old was just so beautiful; she said to me, ‘oh, but mum, all kids are different.’

“We had been a bit anxious thinking about how to prepare them, what would this mean for them, but actually children are so wonderfully resilient and matter-of-fact.

“Once he arrived, they said ‘oh, he’s just like any baby.’”

Alison and Ethan at the beach

Unfortunately, Ethan had a tough introduction to life, spending his first 12 weeks in hospital, most of that time in Intensive Care. He became dangerously ill, but pulled through and went on to have successful heart surgery and a bowel operation which looks to have been successful.

“His first birthday is coming up in October and we’re just really looking forward to celebrating that and hopefully the major medical interventions will be finished by then and we can get on with a more normal life,” says Alison.

Alison says they chose the name Ethan because in Hebrew it means strong and optimistic and standing firm. Asked what her hopes are for him, she replies: “that he knows that he is deeply loved by God and he is created in the image of God himself, and I have a great deal of confidence that he will know that he is loved by our family and that he’s accepted for who he is.

Alison says she is not naïve about the challenges that Ethan faces.

“As a parent I wish that he’d never had to experience the difficult medical procedures he’s had. I’m working very hard with a team of therapists to address his developmental delays and I’m also very aware that people with disabilities in Australia continue to experience abuse and discrimination and there’s a lot of work to be done to uphold the rights and the dignity of people with disabilities.

“I’m not naïve to that. Ethan is my son and I love him, but I also will be doing what I can to protect him and to protect others. But it’s part of life.”

She says Down Syndrome Australia is working hard to ensure that when people get a prenatal diagnosis of Down syndrome that they be given accurate information about what it means to have an extra chromosome, and what life often looks like.

Ethan with his adoring siblings

“For me I had always seen people with Down syndrome included in community life, so for me it wasn’t an unknown. I can appreciate for people who haven’t had that experience – and, of course, these days it’s becoming more rare for people to have that experience – then it’s a real unknown.”

The more Alison has engaged with the Down syndrome community, the more she has realised the huge potential Ethan has.

“I have so many hopes and dreams for him,” she says.

“Now he’s home and he’s playing and he’s feeding himself and he’s sitting up – he’s progressing really well. I can just see there are so many opportunities.”

Ethan is progressing well

She acknowledges that, thanks to the “very brave parents, particularly across the last 30 years, who have demanded that their children’s rights and wellbeing be respected,”  there have been fantastic improvements in treatment for heart conditions or other conditions common to children with Down syndrome, leading to much better health and quality of life.

“Thirty years ago the life expectancy of someone with Down syndrome might be 25; now it’s 60 and really that comes down to people getting good medical treatment but also support to enjoy normal life, to find a job, have a partner, to be included in the community and, when people are enabled to do those things, it becomes very clear that they flourish – and that gives me great hope.

“I really have enjoyed reading a lot of stories about people with Down syndrome who have gone on to get married, to go to university, to enjoy sport; and many people with Down syndrome have a lot of ability, it’s just that they need a bit of extra support and encouragement.”

One of the important things Ethan has brought into Alison’s life is a deeper understanding of grace.

“I think Ethan challenges us to understand grace more because he is loved by God for who he is, not what he can do. And we’re all in the same situation – we’re all loved by God for who we are not for what we can do. Although I did know that before, I would say that Ethan has helped me understand grace more deeply.”