'They almost broke me': Parents fighting to give birth to children with Down Syndrome | MCUTimes

‘They almost broke me’: Parents fighting to give birth to children with Down Syndrome

Fewer children are being born with Down Syndrome. Is the health system leading more parents to terminate? JEHAN CASINADER investigates.

The appointment stretched for an eternity. Karen Loo lay on a hospital bed, watching a sonographer staring at a computer screen. At 12 weeks pregnant, she was having a scan to check on her unborn child. But there was also a knot growing in her stomach.

From the technician’s furrowed brow, Loo knew there was a problem. After a few minutes of silence, she discovered why. At the back of her foetus’ neck, a fold of skin had become thick. That’s a red flag for a host of genetic conditions.

“I was completely overwhelmed,” she says. “My whole world had just changed. I went from bright, upbeat and looking forward to meeting our baby – to, suddenly, ‘Oh my goodness, something could be drastically wrong.’”

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Prenatal screening is publicly funded, and offered to all pregnant women. It’s optional, but around 40,000 screens take place each year.

Typically, ultrasound and blood test results are combined with a woman’s age and weight to present a “risk” estimate for genetic conditions. Women at “increased risk” are offered invasive testing to confirm a diagnosis.

“I told our obstetrician, ‘Just so you’re aware – regardless of the test result, we won’t abort’,” says Loo. “Straight off the bat, he said, ‘Well, why bother with the test if you won’t abort?’ I was shocked. I said, ‘Because we might need to prepare for a very different future’. But from that moment, I felt like I was fighting for my son’s life.”

Karen Loo and husband Leon with 2-year-old Cayden.

DAVID WHITE/STUFF

Karen Loo and husband Leon with 2-year-old Cayden.

At 14 weeks, a test confirmed that Loo’s son had Down Syndrome. Ministry of Health guidelines say clinicians should “support women to make an informed decision” about whether to continue or terminate the pregnancy. In her case, Loo says the process was weighted towards termination.

“The doctors kept telling us that our child had a dodgy heart, and he might not live. We were repeatedly told that we had ‘options’. The overall impression was that we should abort – that it would just be easier. There was subtle but continuous pressure on us to choose this path. If we didn’t, we felt we were going against our doctors’ advice.

“They kept asking whether we wanted to abort. I got so frustrated that I said, ‘Look, put it in bold, capital letters on our file: do not talk to us about abortion’. That’s how strong I had to be to get them to back off.”

After an ultrasound, the technician didn’t give Loo the photographs of her unborn baby. She believes the technician simply assumed the couple would end the pregnancy.

“On another occasion, a sonographer said, ‘You’re so brave, going through with this. Most parents wouldn’t.’ I thought that was quite revealing, coming from someone in the health sector. She gave me a huge hug, and I sobbed and sobbed. It was the first time someone acknowledged just how hard this was.

“If I was younger or less strong-willed, I think I would have caved in to the pressure from my doctors. They almost broke me.”

The subtle art of talking about Down Syndrome

Down Syndrome is caused by an extra chromosome. Many people with the condition lead busy, healthy lives. However, they may also have cognitive impairment and a range of physical health issues.

There’s no particular reason why a child is born with Down Syndrome. It naturally occurs in the population, and is not usually passed down from generation to generation – meaning it can’t be eliminated.

However, data obtained by Stuff from the NZ Congenital Anomalies Registry shows a significant drop in the number of children born with Down Syndrome over the past two decades. In 2000, one in 750 babies had the condition. By 2019, that number had fallen to one in 1200.

How come? Could it be that more parents – who know the genetic status of their unborn child – are choosing to terminate?

For privacy reasons, the Government does not collect the data that could answer that question. We don’t know how many parents who receive a Down Syndrome diagnosis then choose to end the pregnancy. However, Professor Stephen Robertson, an expert in clinical genetics at Otago University, believes there’s no other credible explanation.

“I suspect that testing has contributed to the reduction of children born with this diagnosis,” he says. “It’s hard to conceive of any other reason [for the drop].”

In his clinical work, Robertson diagnoses and treats a range of genetic conditions. He says responding to the needs of different parents is a “subtle art”, and time-poor clinicians sometimes find it hard to present information in a neutral, supportive way.

“It’s important to tell parents about the lived experience of people with Down Syndrome – how happy many of them are, and how they can flourish as human beings. You also have to speak to the medical consequences of the condition, including possible complications or the need for surgery, the longevity and quality of life, and whether they’ll be dependent.

“It’s important to describe a life – not just a set of medical issues that may complicate a life. Each couple must then decide how to interpret that information.”

Stuff has spoken to 12 mothers of children with Down Syndrome, each of whom received prenatal screening. Their experiences vary, but the majority felt some form of pressure from health professionals to terminate their pregnancy.

Hana Carpenter with son Reuben, who was born with Down Syndrome.

MONIQUE FORD/Stuff

Hana Carpenter with son Reuben, who was born with Down Syndrome.

“A GP said to me, ‘You don’t have to do this, you know. It’ll define your life’,” says Lower Hutt mum Hana Carpenter. “She just couldn’t understand that we didn’t mind having a child with Down Syndrome.”

On the night of the birth, Carpenter was in extreme pain, and her baby’s heart rate was dropping. She agreed to a caesarean. On the way to the theatre, she was met by a senior clinician who was clutching her file.

“She said, ‘I see that your son has Down Syndrome. This is a bit of a mean question, but if he needs resuscitation, do you want us to resuscitate him, or let nature take its course?’ We said, ‘What do you mean?’ She repeated the same question – very specifically – with the same wording.

“That alarmed us. We had assumed that a doctor’s job is to deliver a healthy baby and do everything they can to keep the baby alive. But obviously, she viewed a child with Down Syndrome differently, and the usual medical rules didn’t apply.”

Some genetic conditions are deemed “incompatible with life”, and a newborn child is only expected to survive for a few hours or days. However, people with Down Syndrome commonly live into their 50s and 60s.

“Our child was healthy and did not have a life-threatening condition,” says Carpenter. “After being born, he did need resuscitation. So, if we had told them not to do that, would they have just let him die?

“The whole experience was very traumatic for me. I was shaking. The day after Reuben was born, I had a nightmare that [my husband] Sam and I were trying to use the hospital equipment to resuscitate our child while all the staff were watching. Psychologically, that dream shows how unsafe I felt.”

The couple complained to the Health and Disability Commissioner. They have chosen not to name the clinician or the district health board in this story, because their complaint is still being investigated.

Four-year-old Reuben had surgery to close a hole in his heart. His development is delayed and he’s just learning to talk, but he’s making great progress. During Stuff’s visit, Reuben sat on the carpet, busily pushing toy cars down his father’s back. At kindy, he’s popular – especially with the girls.

Four-year-old Reuben Carpenter enjoys emptying the dishwasher.

MONIQUE FORD/Stuff

Four-year-old Reuben Carpenter enjoys emptying the dishwasher.

After her son was born, Carpenter says the health system has been “amazing”, and that it provides plenty of support for children with Down Syndrome. She just can’t understand why she felt so unsupported while pregnant.

“I don’t expect a doctor to say, ‘Yay, good for you – your child has Down Syndrome’. But they also don’t need to say, ‘Oh, woe is you. The world is ending.’”

Well-informed choices?

Prenatal screening for Down Syndrome has been available in New Zealand, in some form, since 1968. The technology has advanced significantly since then.

In 2007, a Government advisory panel found the process was “unsafe” and “ad hoc”. As a result, a national screening programme was launched in 2010, overseen by the National Screening Unit, a division of the Ministry of Health.

The ministry says screening exists to allow prospective parents to make “informed choices”. But advocates in the Down Syndrome community believe parents aren’t making real choices, because they’re not fully informed.

Zandra Vaccarino, executive officer of the New Zealand Down Syndrome Association, is regularly contacted by pregnant women who say their doctors have only provided information about medical risks and termination options.

“Often, a diagnosis starts with, ‘I’m sorry to tell you’ or ‘I have bad news’. This language is, in itself, discriminatory,” says Vaccarino. “It reveals the health professional is carrying bias – and they may not even be aware of it.”

Medical terms used to describe Down Syndrome are emotionally-loaded. It’s often described as a chromosome “abnormality”, a birth “defect” or a genetic “disorder”. Doctors describe health “risks”, not probabilities.

The ministry says there is “no standard script” for how diagnostic information is delivered to parents. It expects clinicians to provide “accurate, balanced and unbiased” information. This view is supported by the College of Midwives and the Royal Australian and New Zealand College of Obstetricians and Gynaecologists. Both organisations also have professional standards.

Vaccarino says the system lacks rigour. She wants all staff involved with screening to receive specialist training, to learn how to communicate in a neutral way. She also wants parents to receive more comprehensive information about Down Syndrome, and to be given enough time to explore their options.

At a deeper level, however, Vaccarino is fundamentally opposed to children with Down Syndrome being “screened out” on the basis of their disability.

“We do not consider that Down Syndrome is, in itself, a reason for termination. We think they should be respected and valued as equal members of the community, and allowed to fulfil their potential.”

‘I wasn’t giving birth to a problem’

In many developed countries, prenatal screening has become the norm for pregnant women. In Denmark, 95 percent of those who receive a prenatal diagnosis then end the pregnancy.

In New Zealand, around 50 children are born with Down Syndrome each year. But advocates expect the live birth rate will continue to fall, as it already has over the past 20 years.

Jo Chiet with her sons Micah, left, and Jethro.

DAVID UNWIN/Stuff

Jo Chiet with her sons Micah, left, and Jethro.

“We can’t screen for children who will die from cancer,” says Whanganui mum Jo Chiet. “We can’t screen for children who will grow up to be addicts or criminals. But we can screen for Down Syndrome, and we hold these children to a much higher standard – before they’re even born. Why is that?”

Early in her pregnancy, Chiet received a “low risk” result for Down Syndrome. But after further examination, doctors established that her child did have the condition.

“You go down this dark rabbit hole of scans, and more scans. There are lots of big conversations about big things. It swallowed me up, and it took away the magic of being pregnant. I had to be reminded that I wasn’t giving birth to a problem – I was giving birth to a boy.”

Chiet and her husband had “blindly” agreed to prenatal screening, without realising they would face a major decision if their unborn child had a genetic condition.

“We opened Pandora’s box, and couldn’t put the lid back on. We thought, ‘Hang on, what have we done? What are we actually testing for? What are our views on abortion?’ As a couple, we had some difficult conversations about what our values were. At the end of the day, this pregnancy was planned, and we wanted a baby – with or without Down Syndrome.

“If you have a typical baby, no one jumps on Google and says, ‘Here are all the things that could go wrong in this child’s entire life’. Even if a child is born prematurely, no one will question whether they should have been born. But for a child with Down Syndrome, some people say, ‘The risks are too high’, or ‘This baby isn’t quite what we’re after’.”

Jethro Chiet loves to walk his family’s dog, Hugo.

DAVID UNWIN/Stuff

Jethro Chiet loves to walk his family’s dog, Hugo.

Chiet is pro-choice, and supports prenatal testing. She believes most parents agonise over a decision to terminate a pregnancy, and do not make that decision lightly.

The problem, Chiet says, is that a positive test for Down Syndrome cannot predict a child’s quality of life. While her son has faced health challenges, he’s now thriving.

“Jethro is six. He’s a dancer, a sportsman, a brother and a friend. He couldn’t care less that he has Down Syndrome. I’ve learnt so much from him, because of his ability to be in the moment. He just loves what he loves – and loves who he loves. He’s free to be himself.”

The world is Jethro Chiet’s oyster, says his mum Jo.

DAVID UNWIN/Stuff

The world is Jethro Chiet’s oyster, says his mum Jo.

Recently, a New Zealand film called Poppy cast Libby Hunsdale, a young woman with Down Syndrome, as its star. With increased visibility and social acceptance, Chiet says there has “never been a better time” to have Down Syndrome.

“These young people are integrated into the community. They have the opportunity to pursue their interests. Jethro will probably drive. He might live independently. He may even get married. The world’s his oyster.”

A life, not a sentence

For Karen Loo, the hardest thing about being pregnant with a child with Down Syndrome was the long list of “what-ifs”: all of the possible challenges her son could face.

“My whole life had been turned upside down. One day, I was sitting outside the hospital thinking, ‘I don’t know how to do this’. Suddenly, I felt this rhythmic tapping in my tummy, and it just felt like my baby was saying, ‘I’m here. Give me a chance.’”

Cayden Loo was born prematurely, and was in intensive care for 11 days. In his first year, he fought pneumonia, bronchiolitis and seizures. He also had open heart surgery.

Cayden Loo had to fight for life after being born prematurely.

DAVID WHITE/STUFF

Cayden Loo had to fight for life after being born prematurely.

That year, Cayden spent 91 nights in hospital. Many times, his life was at risk, and his family considered whether palliative care would be necessary.

But now, just after his second birthday, Cayden is doing “sensationally well”, according to his paediatrician. He enjoys throwing himself down slides, and riding on the back of his parents’ bikes. He has also learnt how to say “Mummy”.

While these may seem like ordinary milestones for a 2-year-old, they’re huge achievements for a child with Down Syndrome – especially a boy who has spent so much time in hospital.

While her family’s experience of Down Syndrome has been particularly hard, Loo wants other parents to know that the condition “is not a life sentence”.

“Regardless of his diagnosis, Cayden is our child. He has our mannerisms, he enjoys similar things to us, and he has a real zest for life.

“Nothing could have prepared us for what we went through. But my advice to parents is not to let fear – or other people’s prejudice – dictate your decisions. Our son is flourishing now, and we couldn’t be more thrilled to have him in our lives.”

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