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Colette
Here, a story on prenatal testing from the Ottawa Citizen newspaper.
'He's brought so much'For Dr. Lise Poirier-Groulx, becoming the mother of a son with Down syndrome changed the way she looks at the world
Bruce Ward
The Ottawa Citizen
Sunday, March 02, 2008
As a medical doctor, Lise Poirier-Groulx trusts in science. But when she was told in her eighth month of pregnancy that there was a problem with her unborn child she reacted like any mother: she panicked.
There had been no complications -- until she went for a routine ultrasound at 34 weeks gestation to check the baby's position. And then she found herself caught in a genetic accident. A doctor began telling her about the ultrasound images, explaining the abnormalities as one physician to another. But as she heard the words, her mother's heart was breaking.
Her son Christian was born with Down syndrome and congenital heart defects. He is eight now, a scamp who is adored by his big sisters Isabelle, 15, and 12-year-old Geneviève. Among teachers at his school in Orléans, Christian is known as "the star" because he is so outgoing. In his integrated Grade 2 class, the kids watch over him and make sure he is part of all their activities.
Christian is "well under his skin," as his mom puts it, and happier than many of the so-called normal people she sees in her psychotherapy practice. But Christian came into the world without the medical profession's seal of approval. His parents faced pressure and silent disapproval from doctors when they stated their choice, again and again, to have the baby.
Dr. Poirier-Groulx was 40 when she became pregnant with Christian. She and her husband François were raising two healthy girls and did not expect to have more children.
Still, she found herself marvelling at the easy time she was having. All that changed with the ultrasound. She was told that the baby was too small, that the amniotic fluid around him was inadequate. Additional tests showed that the baby also had "a severe congenital heart malfunction incompatible with life outside the womb."
A neonatologist advised her that the best course was to induce premature labour. The fetus, which weighed only 1.5 pounds, would almost certainly die during delivery or shortly after birth. But she and her husband had already decided not to terminate the pregnancy if the baby was diagnosed with a handicap. "When you're told in pregnancy that something is wrong with your child, obviously you panic," said Dr. Poirier-Groulx. "When I was going through that, it was assumed that you were going to terminate. Everywhere I went it was assumed.
"I got mostly cold stares and silences -- Is this doctor for real? What is she doing? -- that kind of attitude. We had to constantly state it: No, we don't want to terminate. There was none of this talk -- the pros and cons, positives and negatives of having a handicapped child. We never got that. It was just negative, when do you want to do it (the termination) type of thing.
"Although the system says they respect your decision and all that, it is not the experience of most women. When I was going through it eight years ago, there was practically nothing. It was like a void as far as positive testimonies of parents. We got one pamphlet about parents who had chosen not to terminate."
Christian was born by caesarean section at term, 38 weeks gestation. He weighed four pounds, and was more vigorous than expected. He spent almost three-quarters of his first year in hospital, and he has surpassed all expectations regarding his growth, development and quality of life.
Life with Christian is not easy, she said, but it is rewarding.
"I don't want to butter it up like this is a fairy tale because it isn't. We still have a lot of medical issues. He's still not sleeping through the night because he has sleep apnea. Obviously, if he's not sleeping, we're not. We're chronically sleep-deprived. That's a difficult part, I don't want to sugar- coat it. It's a lot more work than a regular child, with his physiotherapy, speech therapy and occupational therapy."
Christian had heart surgery in 2006, and will need another heart operation in three or four years. So far in his short life, he has had 15 surgical interventions.
"It's quite an adventure to live with him and he's brought so much. For me, he has changed my whole perspective When I looked at people who lived with a handicap, I would think poor them, like they were an object of pity. But now, because I live with my son, I see them as a little bit like prophets because they have such a strong message to bring about humanity, about the strength of the human spirit.
"My life has changed drastically, but I also see how he touches people. At school everybody notices him and people are drawn to him. Nobody is neutral when they come in contact with him. He either brings out the worst or the best in people. When I say he's well under his skin, I mean he just takes life in the present moment."
Christian has a huge effect on his sisters' lives as well.
"They find him annoying at times, just like anyone would find their younger brother annoying. The big thing they find difficult is it takes a lot of our time, my husband and myself. We constantly have to monitor him, he can't be left alone because he has a mental disability, he doesn't have any judgment about safety. Because we're tired, we don't have energy or a lot of time to spend with them. But we talk about that. They let us know that's the part they find difficult."
But the girls have also learned from Christian.
"They have developed and learned things I didn't need to teach them, just by contact. They'll see a person with a handicap at the shopping mall and they'll say, 'Oh my gosh this person is cute.' They see the beauty of the person behind the handicap. We don't have to talk about that, they live it." Dr. Poirier-Groulx believes Christian has "an advanced emotional connection, a little bit like a blind person who has increased hearing or touch perception. "He senses moods, he'll come to you and just touch your face and look at you. And you're kind of startled. It's a little bit eerie sometimes that he picks that up."
Dr. Poirier-Groulx has endured thoughtless remarks about Christian by adults who seem to disapprove of his existence in the world. She worries that her son will be stigmatized.
"I hope Christian never gets to understand, that somehow it would come to him in a very direct way, that his life is not worth living or people look at him and think that he is a lesser human being. That really worries me."
© The Ottawa Citizen 2008
