Where Have All the Down Syndrome Babies Gone?
Many women who find out their unborn baby has a birth defect have a difficult choice to make: let the child be born or terminate the pregnancy?
Ronda Kaysen: Janet knew from the start that her pregnancy was doomed. First there was the news that she was carrying twins and the ultrasound that showed warning signs of birth defects. A few weeks later, one of the twins "disappeared" in what is known as vanishing twin syndrome. By 18 weeks, she learned that the baby that remained, a boy, had a severe heart defect that would likely require a heart transplant. He also had Down syndrome.
"Maybe it's a sixth sense," said Janet, 43, speaking to momlogic from her home outside Boston. "But I had a very ominous feeling that things weren't going to work out for us."
Her situation was so dire that her doctors convened a meeting of the medical ethics board to decide whether it was ethical to perform a heart transplant on an infant with Down syndrome because babies with Down syndrome or trisomy 21 also often have compromised immune systems and a recipient of a heart transplant needs immunosuppressive drugs, Janet said.
"That was very sobering and it really made me think about it," she said. "At that point, my husband and I had a really frank conversation."
She decided to terminate the pregnancy. "I was just heartbroken. I never thought we'd be in a position like that," she said. "My husband, he's a great guy, we live in a great community, we have great schools, we have two beautiful children. I never would have thought we'd be in this situation in a million years."
Janet, who asked to use only her first name to protect her family's privacy, was not alone in her decision. Of the women who learn that their baby will be born with Down syndrome, as many as 92 percent decide to abort.
In 2006, the American College of Obstetricians and Gynecologists changed the guidelines on prenatal testing, suggesting that all pregnant women be screened for Down syndrome, regardless of their age. In the past, only women at high risk, such as those over age 35, were tested. Down syndrome advocates fear the result will be a near freefall in the number of births of children with Down syndrome.
The numbers have long been dwindling. Between 1989 and 2005, there was a 15 percent drop in births of babies with Down syndrome. Researchers estimate that there should have been a 34 percent increase during that time because women are having babies later in life, which increases the likelihood of having a child with the disorder. Some wonder if Down syndrome, which is the most common chromosomal condition in the United States and affects 400,000 Americans, will vanish entirely.
"With the new prenatal tests that are slated to come out next year, I anticipate that there will be a steady decline in births" of children with Down syndrome, said Dr. Brian Skotko, a pediatrician in the Down syndrome program at Children's Hospital Boston and Chair of Board of Directors for the Massachusetts Down syndrome Congress (MDSC). New tests will soon hit the market that will screen women for the disorder as early as six weeks into their pregnancies. "Will babies with Down syndrome slowly disappear to the point that Down syndrome is a diagnosis of yesteryear?"
Skotko worries that many of the women who terminate their pregnancies don't have a full picture of what life is like raising a child with the disorder. The information they get from doctors is often inaccurate and uninformed. Down syndrome, a genetic condition caused by an extra chromosome, can bring with it an array of challenges including mental retardation, developmental delays, and health problems like heart defects and digestive tract defects.
"I am concerned that many women around the country are making decisions that aren't based on accurate information and that becomes a provocative question," said Skotko, whose sister has Down syndrome.
One common concern is that having a child with Down syndrome will put a strain on a marriage, but families with a child with Down syndrome have a lower divorce rate. Parents often worry that a disabled child will be a burden to the other siblings, but Skotko notes that siblings learn valuable life lessons in patience and empathy. Many people with Down syndrome are highly functioning and go on to live independently and hold down jobs. And because of medical advances, the average lifespan of people with Down syndrome has increased to 55 years. "They're living long and robust lives," Skotko said.
Skotko would like to see women receive accurate, up-to-date, standardized information when they receive the diagnosis and be connected with other families who have a child with Down syndrome.
When doctors told Melanie McLaughlin that the baby she was carrying had a hole through all four chambers of her heart and a 50 percent chance of having Down syndrome, she was devastated. It took a week for the results of the amniocentesis to come back.
"It was the most heartbreaking week of our life," said McLaughlin, who lives outside Boston and has two other children. "I wish now that I had known more. I knew nothing about Down syndrome. I knew nothing about families that had children with Down syndrome. I was completely uneducated. It was all based on fear. I tortured myself in that week."
When she got the news -- delivered to her over the phone while she was at the supermarket -- that her baby girl did have Down syndrome, she burst into tears and left the store with her grocery cart half full. "I ran into the parking lot and was just sobbing and called my husband, heartbroken, and came home and cried some more," she said.
McLaughlin, who is a documentary filmmaker, scoured the Internet for information. She contacted First Call, a first response program run by MDSC, who connected her with a family of a child with Down syndrome.
The family invited her to their home. She and her husband met their 4-year-old daughter Anna. "She's just the most amazing, beautiful little girl," said McLaughlin. "At one point she sat on my husband's lap and said 'no, daddy do it' and I saw him melt."
After meeting Anna and reading a collection of essays by mothers of children with Down syndrome, McLaughlin went from feeling 70 percent certain that she'd terminate the pregnancy, to deciding to continue it.
Her daughter, Gracie, was born a few months later. When she was two months old she underwent heart surgery and recovered. She's now nearly 2 years old and in preschool one day a week. She speaks a few words and can sign nearly 25. "She's beautiful, she's funny, she's smart," McLaughlin said of her youngest daughter. "She's the baby. She's the little princess. Everybody just adores her."
Down syndrome advocates would like to see more women know about stories like Gracie.
"Our experience is that they're really a very welcome addition to most of the families that we know," said Maureen Gallagher, executive director of MDSC.
For the women who chose to terminate their pregnancies, the claims by Down syndrome advocates that women are making uniformed decisions is particularly painful.
"I think that they want to believe that no one who is informed would choose termination, but the reality is that most women are informed," said Ayliea Holl, the administrator of A Heartbreaking Choice, an online forum for women who've terminated a pregnancy for medical reasons. Holl terminated her pregnancy when she learned her baby would be born with a heart defect, digestive tract defects and Down syndrome. "We have done our research, weighed our choices... sometimes, the right choice for the parents is letting their child go."
Some of the mothers who've terminated their pregnancies argue that it's the Down syndrome advocates who are painting the inaccurate picture. Not all children with Down syndrome are healthy or highly functioning, they say.
"The picture that is put forth is that of a healthy, happy child with mental delays," Holl said. "The truth is that many of these children develop health issues as they get older, and many young adults with Down syndrome do not grow up to be self-sufficient adults. The adults with Down syndrome you see holding down simple jobs are the exception, not the rule."
For Janet, the Boston mom who terminated her pregnancy, one of the deciding factors was how a very sick child would affect her two other children. "All I could do was look at my kids and think, 'You're on your own. I'm going to be spending my life at Children's Hospital.'"
 | Ronda Kaysen is a freelance writer. Her work has appeared in the New York Times, Washington Post, BusinessWeek.com, Architectural Record, Huffington Post, New York Observer and AM New York. She lives in Brooklyn with her family. |
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