Infants with Soul

When facing a quality-of-life issue at childbirth, there’s more to consider, says Irene Voysey. There’s a whole life beyond.

The ultrasound revelation was stunning and unexpected. Louise and Stuart Crawshaw were being told their unborn baby had a diaphragmatic hernia. A hole in the baby’s diaphragm had allowed the stomach to enter the chest cavity. The tiny heart had been pushed to the right, and the growth of the lungs was severely restricted. Doctors warned that the baby, unable to breath, would probably die at birth or soon after. Several times medical staff suggested an abortion.
The response by Louise and Stuart, and their attitude over the traumatic months that followed, rippled through the lives of hundreds of young people in Sydney. Stuart, the youth minister at Gymea Anglican church, Sydney, leads a youth community that grew from a handful to several hundred, who often link up with other youth communities around Sydney. He and Lou had been dedicated to proclaiming Jesus Christ, yet here they were, in a situation that many could see as far from blessed.

The challenge wasn’t theirs alone. Some church members admitted they didn’t know how to pray in this instance. “How can we pray for a healthy baby when it already has disabilities?” asked one. Another said, after Ethan was born, “I prayed for a normal baby, but, then, why didn’t I knit booties as I’ve done before?” Many feared that the faith of the young community would falter in the face of the almost certain tragedy to come.

Said Stuart at the time, “The psalmist wrote that God knows us even before we are born. Our child has a soul. We don’t see that just because the technology is available, we should terminate the life of our baby.”

Australian bioethicist Professor Peter Singer would have disagreed. Several months after Ethan was born, and breathed through lungs that ultrasound machinery had failed to sense, Singer may still have advocated that Ethan be aborted. In all probability he would have pointed out that with Ethan’s rare Iverark’s syndrome, the Crawshaws were on the starting block of a too-cruel marathon, with massive hurdles, and without a clear medical victory in sight.
At a conference in Concord, New Hampshire, USA, in May 2001, Singer, the first professor of bioethics to be employed by Princeton University, argued that newborns don’t have what he calls the awareness of their existence over time that separates humans from most animals. He thought that time frame develops sometime over the first year of life.
“So I don’t think that newborn infants have the same right to life that older children or adults have,” he said.

Not surprising, protesters picketed the conference. While not endorsing Singer’s views, Princeton feels his teaching creates intellectual diversity. But one woman participant said, “It’s a scary world when you can go to a meeting and talk about who deserves to live and who should be killed.”

Killing his third child was never an option for Philip Moorhouse of Caulfield, Victoria, who believes God prepared him for a child with Down syndrome. After Matthew’s birth, Philip finally told his wife, Michele, he’d been drawn to watching television documentaries about disability during her pregnancy.

Michele says, “We once sat at the back of a church with a mum and her small child with Down syndrome. Philip was fascinated, observing this child close up. All this was totally out of character!”

But Michele, too, was surprised at a recurring thought throughout her pregnancy: What if this child isn’t perfect, would you still love and care for it? she asked herself.
Although she was 37, she refused tests, knowing abortions were against their belief in God’s value of life. The ultra-sound at 18 weeks showed a healthy baby, but Matthew was gravely ill at birth and there was a real possibility he would die.

“The fact of his having Down’s seemed rather secondary then,” says Michele, adding, “a wise paediatrician gave us a vision of the purposeful life a person with Down syndrome could have, and also helped us find details of the Down Syndrome Association and Early Intervention Centres. At a disability expo, a young man with Down syndrome served us at the Centrelink stand. He was a great example of hope. We’re very fortunate to live in a time where children with disabilities are given opportunities that 20 years ago weren’t available to them.”

Forty-three years ago, it took eight months before Joan Ellis and her husband, Graham, the Uniting Church minister at Northbridge, Sydney, found out that their baby had cerebral palsy. It was the knowledgeable local clinic sister who persisted in urging the Ellises to take eight-month-old David to a Macquarie Street paediatrician. The specialist ruled out cerebral palsy and informed the Ellises that David was suffering from a rare mental illness.

The Ellises then took David to the spastic centre where three doctors examined him and confirmed the diagnosis. He would be severely disabled, they said, but added that David could certainly be educated.

“Following the diagnosis of that terrible mental illness, this diagnosis was like going from hell to heaven!” says Joan.

While early detection of cerebral palsy is better than it was when David was born, the Ellises believe there’s still ignorance about it in medical circles. They found that it is usually those doctors who have had personal experience with sufferers who are most useful to worried parents.

The Crawshaws have also had difficulty accessing the right information. Lou says, “Eventually, it was God who pointed us to the right place for us to have our baby—certainly not the specialists we were seeing. We discovered the High Risk Clinic at the Royal Women’s Hospital, which is attached to the Sydney Children’s Hospital, Randwick. The love, support and care there was exemplary.”

Ethan spent three months in hospital following his birth in 1998 and since then he’s had three more operations. He wears a brace 20 hours a day for a curvature of the spine and will probably need a spinal fusion when he is nine years old. He requires regular monitoring and may require further surgery. But the heart condition that is ordinarily a primary issue with his syndrome is nonexistent and despite a number of internal anomalies, and his scoliosis, his prognosis is excellent.

Lou and Stuart say, “We found it was important to be equipped with knowledge when dealing with the medical profession. This ensured we didn’t feel intimidated. We needed to know as much about the condition as the doctors, so we were able to ask the right questions and then understand their answers. The Internet is an extremely useful source of medical information in this regard.”

However, while the provision of information regarding support for parents is vitally important to prevent further trauma following the birth of a disabled infant, there’s a disturbing overall lack of information on the Internet about disabled infants in Australia and New Zealand. The Disability Overview, by the Australian Bureau of Statistics, for example, is 10 years old. The volume of helpful British and American information should spur antipodean governments to improve sources of assistance that can be accessed from a home computer.

Finding a support group hasn’t been easy for the Crawshaws, because Ethan’s syndrome is so rare. Their only contact comprises two mothers and their children in England.

Louise and Stuart say their experience has been “that unless you’ve gone through it, nobody really knows what you’re dealing with. We felt extremely isolated during the pregnancy, and we’ve been thrilled to share with others, so they can avoid the isolation that we experienced.”
Michele Moorhouse echoes this sentiment: “God has been incredibly faithful, but often the road has felt very lonely and desert-like,” she says.

The Moorhouse family have seen infant Matthew, now four years old, through various operations and two years of oxygen at home. He has severe hearing loss, and there was the realisation that a mainstream education with his siblings may not occur.

“I understand how many families with disabled children have broken marriages,” says Michele. “There’s a huge learning curve; many more decisions; uncertainty; less time; difficulties getting a babysitter/ carer, and a heavy focus on the child with the disability, which can lead to imbalance in other relationships within the family.”

But Michele is also quick to sing four-year-old Matthew’s praises: “The price is high, but we love our little boy dearly. He brings sunshine to our lives and his zest for life and his simplicity captures everyone he meets.”

The Crawshaws say they rejoice at what an amazing child Ethan is. “He has special qualities that we believe are a result of what he’s gone through. He’s full of empathy, and is extremely loving and caring. He is a real gift from God.”

And their church agrees, especially the youth community, who prayed for Ethan.
Joan and Graham Ellis, who for 42 years have carried the burdens that Peter Singer believes are too heavy for any family, are also filled with delight in David. Joan says that the lack of muscle control of spastic sufferers leads the general public to think they’re mentally retarded.
“But David is highly intelligent, has a great sense of humour and an amazing acceptance of his disability. Graham and I have a better understanding of others with difficulties and we’re able to help them, which I don’t think we’d have done without David. We are much better people because of him.”

David loves fine music and is always moved to tears by the King’s College Choir’s rendition of “Praise, my soul, the King of heaven.” Stuart Crawshaw is probably right: every child has a soul, and a soul that praises its Creator is certainly a soul with a life worth saving.

Attitudes

A disabled child is first of all a child—one who coincidentally happens to have a disability.

Every disabled child has feelings, but may be unable to express them adequately.

Building a relationship with a disabled child takes time, so be patient.

Don’t expect different children with the same disability to be or act the same. Family structures, values and personality types differ.

Be sensitive in playgroups where mothers with disabled children are present. Discussing your child’s milestones when disabled children are unable to meet those goals may be discouraging or even hurtful.

Parents of disabled children may not appreciate such comments as they “must be special people to have been given a special child by God.” Disabilities, like pain, tears, suffering and wars are part of a fallen world, but one that will one day be restored (see Revelation 21:1-4).