All you need is love: raising two daughters with Down syndrome

When Dakota Skye Rutherford was born after a traumatic caesarean section on November 5, 2006, her parents Joelene and Rob were overwhelmed by shock and sadness. A couple of hours after Joelene emerged from the disorientating fog of the general anaesthetic, a doctor confirmed what the couple already knew in their hearts: their daughter had Down syndrome.

‘‘She was sound asleep when Rob handed her to me,’’ Joelene, 26, remembers, ‘‘but I could tell straight away because of the shape of her eyes, her chubby little face. Even though we knew, hearing the specialist say it broke us in half.’’

The joyful congratulatory messages and gestures that envelop new parents, particularly after the birth of a much-anticipated first-born baby, were replaced by commiseration and tears. ‘‘The whole family cried their eyes out,’’ Joelene says sadly, her eyes downcast. ‘‘It was like someone had died,’’ adds Rob, who is seated opposite in the lounge room of the family’s rented Cardiff home.

The couple was thrust into the confusing and frightening new world of disability. Hospital staff proffered books and information sheets about Down syndrome, a nurse listed the reasons why Dakota had been diagnosed and other medical staff discussed, says Joelene, ‘‘the negatives’’ of the condition. A visit from a family with a child with the condition was hastily arranged.

They were also put in contact with Down Syndrome NSW, which provides support to families trying to navigate their way through emotion and information overload.

‘‘The first thing we say when we meet new parents is ‘congratulations’,’’ family support officer Judy Davidson says. ‘‘You’d be surprised how many people tell us that that’s the first time anyone has said that to them.’’

Joelene and Rob, who had no idea what the diagnosis meant, learnt that their fair-haired baby was the one-in-700 born with an extra chromosome, which causes problems with the way the brain and body develops. They discovered that Down syndrome is the most common identifiable cause of an intellectual disability and related to the condition are a number of medical issues including heart defects, hearing and visual problems, epilepsy, hypothyroidism and gastrointestinal malformations.

While Dakota struggled to feed because of low muscle tone – this is common among babies born with Down syndrome and is known as hyoptonia – she did not appear to have any other major health problems, which provided some solace during the confusing and distressing 11 days that mother and daughter spent in hospital.

‘‘I remember it like it was yesterday,’’ Rob, 35, says. ‘‘Seeing what Jo went through [with the birth] and then dealing with the fact our baby had a disability, it was really hard to take. I remember driving home in the morning, I was so buggered, and I just cried and cried. I was like that for days. It was so surreal.’’

A routine scan when Joelene was 12 weeks’ pregnant showed that she had a high chance of having a baby with Down syndrome. But at a follow-up ultrasound four weeks later, none of the other physical markers of Down syndrome were detected. The couple was relieved, believing that their longed-for daughter did not have the genetic condition. Then 21 and with no other health concerns apart from debilitating morning sickness, the young mum-to-be did not think she was in the high-risk category. (In fact, the majority of babies with Down syndrome are born to women under 35: more women in this age group have babies and are not necessarily targeted for prenatal screening.)

The couple, who met at a Jehovah’s Witness gathering at the University of Newcastle in 2004, chose not to have more invasive pre-natal testing. Termination was never a consideration: ‘‘It’s our responsibility if we’re going to fall pregnant and we need to deal with whatever follows,’’ Joelene explains.

So they put any concerns at the back of their minds and excitedly prepared for Dakota’s arrival.

‘‘Finding out we were pregnant was the happiest day of our lives,’’ Joelene says, brightening. ‘‘We’d been trying for nine months and just as we decided to stop stressing about it, we got a positive result. We’d been having a few marriage problems and Rob felt that a baby would help. It was such an amazing feeling [being pregnant]. That fixed us.’’

Activists are often motivated by a desire to protect that which they hold dear. The reason for Joelene and Rob’s decision to share their story with Weekender is wrapped snugly in pink and white, and sleeping peacefully in the crook of my left arm. Like her boisterous big sister, five-week-old Ruby Jae was born with Down syndrome.

The couple was told that their third child – they also have a 14-month-old son named Kayden Jon – had the same condition after Joelene was treated for excessive fluid retention when she was 27 weeks’ pregnant.

An ultrasound showed that little Ruby’s bowel had not formed properly, a strong indicator of Down syndrome. This time, Joelene wanted to know for sure so she could be spared the shock that followed Dakota’s arrival. Some of the three litres of amniotic fluid that was drained by medical staff was tested.

‘‘I had the procedure on a Tuesday and I rang at lunchtime on Thursday, but the result wasn’t in yet,’’ Joelene calmly recalls. ‘‘And then two hours later I got a call. I could tell straight away from the tone of voice. ‘Hi Joelene’,’’ she says, mimicking the quiet concern of the hospital staff member who had the unenviable task of informing her that her baby had Down’s. Having two children in one family with the condition is rare; the chance of a couple who have one child with Down syndrome conceiving another baby with the condition is about 1percent.

‘‘I rang Rob and I was howling like an animal. How could this happen? Physically, how? We went through every emotion – crying, anger, I was swearing my head off, confusion.’’

Adds Rob: ‘‘Denial. I think we were waiting for that call to say, ‘Sorry, we mixed up your result with someone else’s’. We were delirious, then we were laughing and making jokes, stupid jokes.’’

Each year the couple proudly participates in the Buddy Walk, which is held in Newcastle in October during Down Syndrome Awareness Week, and encourages families to invite their supporters.

The Rutherfords had 30 people walking with them last time.

‘‘I joked that now we’d have two reasons to do the Buddy Walk,’’ Joelene half laughs. ‘‘After we let it sink in, we just went, ‘What can you do?’ That’s where we’re at now. This is our life and we wouldn’t change it.’’

Cradling dark-haired Ruby, who was born four weeks early and required surgery soon after to fix her bowel obstruction, is no different to holding any sweet-smelling newborn. Her nappy pops and bubbles with wind, she purses her lips and starts agitating for a feed with the occasional small cry.

In a world obsessed by image, it’s hard not to feel a pang when taking in her delicate but distinctive facial features, which, for people with Down syndrome, act like a neon sign attracting judgment, prejudice and misunderstanding.

Joelene and Rob deflect lingering stares and insensitive comments with their deep love for each other and their children. They don’t want pity; they would like the rest of us to question our assumptions about Down syndrome.

‘‘When you hear the word ‘disability’ you just think of so many negative things,’’ Rob says. ‘‘I guess that’s what I’ve taken in from the whole experience; having a child with a disability, I don’t really see what Dakota can’t do. She has so much ability.’’

‘‘I don’t even like using the word disability,’’ Joelene adds. ‘‘I prefer special needs.’’

Dakota attends day care and will start kindergarten at Hamilton South Public School next year. She enjoys her books and watching TV and is obsessed with Garfield, Madagascar and Justine Clarke; she’s moved past her Dora the Explorer phase. ‘‘Little Miss Sunshine’’, as her parents call her, loves nursing her little sister and playing with Kayden. Her moods shift like those of any five-year-old – from smiley to stubborn and back again. She has characteristics more in common with family members than other children with Down’s.

‘‘One of the myths you have to deal with as a parent is that children with Down syndrome are ‘always happy, always loving’, whereas people with Down syndrome are like everyone else; they experience a range of emotions,’’ says Judy Davidson, whose 15-year-old daughter Georgia has Down’s. ‘‘They’ll come with the skills and passions that are part of their family and who they are, not their condition.

‘‘A lot of parents can be fed information when they’re holding their tiny newborn baby, ‘Well, don’t expect them to do this, don’t expect them to do that’, whereas what we’re wanting for our babies is what other parents want for their baby – the opportunity to watch them grow and develop their own passions and strengths and to support and encourage them.’’

Joelene is understandably nervous about Dakota starting school. Like most mothers, she fears the barbs of schoolyard bullies.

She admits, mortified, that in high school she was one of the teens who knew the words that would ‘‘set off’’ students with intellectual disabilities.

‘‘Every parent wants their child to be smart and able to cope with life,’’ Joelene says. ‘‘To know that Dakota’s getting to the point where she’s going to have to start defending herself, and to have that intellectual limitation is devastating for me. How is she going to relay to us that she’s had a bad day?’’

The couple is also concerned about the impact that having two siblings with special needs will have on Kayden. So much of their attention and energy is directed at the girls.

It is a demanding juggling act that has thankfully become a little easier since Joelene sought assistance earlier this year when it was all getting too much.

‘‘We decided to do so much on our own,’’ she says, ‘‘but it got to the point where I needed support. I’ve learnt that it’s OK if you’re having trouble coping, you don’t have to be brave all the time.’’

Respite care was arranged for Dakota one day a week and Joelene’s mother, Helen, who lives nearby, assists whenever she can.

‘‘There are plenty of people with kids, not just with Down’s but with other issues, and I don’t want people to think they have to do it all on their own,’’ Joelene says.

‘‘We’re still going to have challenges – everyone does – but there is plenty of help out there. Don’t be ashamed of asking.’’

The only time during the interview that Joelene becomes anxious is when I ask how long they’ve lived in their Cardiff home.

‘‘We’ve actually got to find somewhere else to live because the owners have sold it,’’ she says. The couple has been searching across Newcastle – no easy feat when Rob is working six days a week and Joelene has to arrange care for the two older children – without luck.

‘‘We’ve applied for five houses, but we don’t even get a look-in,’’ Joelene says with a hint of frustration and fear. ‘‘We’re desperate to find somewhere.’’

Joelene had been to two open houses the previous weekend but was overwhelmed by the number of other families submitting applications. ‘‘Everyone’s in the same situation so I know how hard it is,’’ she says, charitably. ‘‘We’ll be right,’’ Rob counters. ‘‘I’m sure something will come along.’’

Four weeks after Dakota was born, Joelene returned to her full-time job in administration and Rob, then a labourer with a back injury, became a stay-at-home dad.

It is clear when talking to the couple that their daughter transformed Rob for the better. He mentions in passing a serious car accident, depression and family issues; it’s not difficult to read between the lines.

‘‘I had a lot of anger,’’ he says now. ‘‘I was popping pills every day [for pain relief]. Thanks to Jo and Dakota, I sorted myself out. I had a job to do with Dakota and it’s made us very strong.’’

Once the couple found out they were expecting a third child, Rob knew it was time to retrain and rejoin the workforce. At his local employment office earlier this year, he noticed a flyer for a week-long indigenous empowerment program founded in Newcastle by Brian Dowd, who operates Black on Track, a respected indigenous employment and development program that is being implemented nationally.

Rob had been toying with the idea of doing youth work and embraced the opportunity to resolve lingering emotional issues.

He now proudly works for Dowd.

‘‘He’s a completely different person to who I married,’’ Joelene says, with respect and admiration. ‘‘This is a brand new Rob. I had to get to know him all over again, it was very emotional for me. He’s so positive now.’’

How have the past five years of dramatic peaks and troughs changed her?

‘‘I’m more content in myself. I haven’t fallen in a heap, I’ve managed to get on with life. I’ve succeeded so far; I hope I continue to be a good mum and carer.

‘‘It’s the hardest job in the world and you’re going to have your bad days and feel like you’re not coping, but you need to know that you’re doing the best you can.’’

Joelene and Rob describe how Dakota – and now little Ruby – have opened their minds.

‘‘You’re proud to say you’ve got a child with Down syndrome,’’ Joelene says. ‘‘I am,’’ Rob adds, smiling. ‘‘I wouldn’t change anything."

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