syndrome is not the worst thing that can happen to a child. They generally grow up into kind individuals, though they often don’t live as long as other people. You could live until you were ninety,” she said with a brief smile. “But people who are born with the syndrome are old by the time they are fifty. If they make it to fifty, which is not always the case. As you know, their appearance is distinct and unmistakable. They are also shorter than most people, and many of them have congenital heart disease. They grow and develop slowly, both physically and mentally. Premature aging and dementia is very common, which is sad but true. And yet they can be a joy to us all. That’s certainly what I think. Don’t you agree?”
“How common is it for a baby to be born with Down syndrome?”
“One in every seven hundred is born with it. Which is actually quite a lot, if you think about it. On average, they live to sixty. They often have a kind of simple wisdom that we others have lost. Something genuine and honest. They are wholly themselves in everything they do and never false in any way. In fact, they make quite an impression and are rather charming. So it always warms my heart to deliver a baby like that. And I’m proud of it.”
“How are they at birth?” Sejer asked. “Tell me, what signs you can see?”
“Newborns with Down syndrome are generally of normal weight and length,” she said, “but they often have what we call low muscle tone. When you pick them up, they feel like a little sack of sand. They’re limp. They lack the muscle tone and suppleness of other newborns. And I can tell you, it was a lot of information for the young couple to take in. We told them that they had the right to care and financial support, as well as extended leave from work.
“There’s a brutal paragraph for pregnant women if they are tested before giving birth. They, of course, dream of having healthy children. Paragraph 2 of the Abortion Act says that they have the legal right to terminate the pregnancy if the fetus has Down syndrome. Which is so sad, but then, that’s life.”
She paused, drew breath, and put her clogs back on.
“And naturally, many parents choose to do that. They can’t face the difficulties it would entail. And anything we can tell them is cold comfort. So it’s a shock, no matter what, and I can understand that. No one has the right to make a moral judgment.”
Sejer nodded. “Did you tell the parents right away when Tommy was born?”
“No, we waited until she had been transferred to the ward and rested a bit. It was the doctor and I who went in. It’s emotionally very demanding, having to tell someone something like that,” she added, “so it’s good if there’s two. You never get used to it.”
“So you remember it well?” Skarre asked.
“Yes, I remember it well. Because of her reaction.”
“What did she say? What did she do?”
The midwife let out a deep sigh. She pulled her hands out of her pockets and folded them in her lap.
“She said, ‘No.’”
“What do you mean?” Skarre pressed. “Simply ‘No’?”
“She was in denial. She said, ‘No, you’ve made a mistake.’ So the doctor had to tell her again that the boy had Down syndrome. That there was no room for doubt. Because that is what they often think, initially. Is it really true? Are you one hundred percent sure? And Lord only knows, it’s a massive comedown. From the greatest joy to the deepest desperation. The child has finally been born after nine long months, but it’s not entirely healthy. I never get used to it,” she told them. “I have to steel myself before I go in. I guess you have to do that in your job as well. I mean, you must have given some people terrible news. So perhaps you know how I feel.”
“Yes, we do,” Sejer said in a gentle voice.
“We comforted them as best we could,” she continued. “We explained her rights in terms of the future and assured them that the boy would
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