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Where Have All the Down Syndrome Babies Gone?

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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?

pregnant woman by the window

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.'"

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39 comments so far | Post a comment now
Sara November 24, 2009, 7:13 AM

Whatever happened to stepping up to the plate and accepting the hand you’ve been dealt? It’s not our job to play God and decide who should live and who should not. I really don’t think anyone is put on this earth by mistake. Don’t just kill them off because a child doesn’t fit the typical mold.

Gigohead  November 24, 2009, 7:25 AM

One of my chat board member on my online group of moms expecting babies in October had a little girl with Trisomy 21. She decided to go ahead and have her baby and now she has her home under hospice care waiting for the little girl to die. Jesus, that must be so hard.

Sorry to disappoint you Sara, but this one is not a “no brainer”. In the case of Trisomy, there is no viability. One has the choice of doing it now or waiting for death later. It’s not about fitting a mold. It’s nature not allowing this life to thrive due to chromosomes.

Anonymous November 24, 2009, 8:07 AM

I’d get rid of it too.

cyndi November 24, 2009, 8:13 AM

I have seven kids, and would have welcomed a down’s syndrome child, had we been blessed with one. Our family has volunteered in the summer for years at a camp for disabled people, and they are funny, kind, and just plain wonderful. To decide to abort simply because they won’t fit the norm is horrifying to me.

Kristin November 24, 2009, 8:41 AM

To say that babies with downs are not viable? That is harsh. Especially since my 27 year old sister is very much viable and has since the day she was born. Even healthy babies are miracles that we seem to just take lightly. A million things can happen in a pregnancy or labor. None of us are guaranteed tomorrow. Where is the faith and hope? I appreciate this blog because the stories of down syndrome children living full and happy lives are far more than those who don’t. And let’s not forget that even though they are considered “abnormal” they are people too. They are people with dreams and desires just like you and me. They just can’t voice them as well. Although, I do think that we should take the time to listen more closely. They have a lot to teach us.

nutmac November 24, 2009, 9:45 AM

Just as there are many varying degree of down syndrome, this issue is not black and white. Google or YouTube “99 balloons” for an example.

chris November 24, 2009, 9:55 AM

After reading this all I can say is Thank you Lord for blessing me with 2 healthy beautiful children. My heart goes out to any women who has to make this kind of decision. I don’t know how I would make this decision and feel so blessed that I will never have to.

Veronica November 24, 2009, 9:55 AM

Exactly nutmac. It is not a black and white issue. What is one person’s choice may not be another’s and that is for nobody to decide but that individual. And for the record, I don’t think anyone would terminate a pregnancy without being informed. How stupid do you think people are? And trisomies are not a gift. They are a mistake of nature. Nobody knows what they would do until they are put in the position of a poor prenatal diagnoisis. I certainly thought I would NEVER abort a pregnancy for any reason and I did.

K November 24, 2009, 10:00 AM

Gigohead you need to check your facts. I’d bet my life that my son with trisomy 21 is very viable and very much alive and healthy.

Chrissy November 24, 2009, 10:31 AM

Not all babies with Down Syndrome have severe phusical ailments. Some do liek the ones that the this article and Gigohead pointed out.
Nutmac is right.
Until anyone has a child with a fatal condition who spends all of their very few years on earth in daily, chronic pain - you can not judge someone who makes the decision not to inflict that on their child.

ProudMommy November 24, 2009, 10:36 AM

To Gigohead who stated “In the case of Trisomy, there is no viability. One has the choice of doing it now or waiting for death later.” You are wholly misinformed and allowed your knowledge of ONE experience to drive your statement. I knew at 12 weeks that my son would have Down syndrome and I put it on God to decide whether we would have this child or not. Now I have a beautiful 17 month old son with DS and I know that God made the right decision. Yes, there are varying degrees of Down syndrome and NO child comes with a lifetime guarantee. We are all waiting for death, aren’t we? That said, you could never look at my son and say that there is no viability. He talks, laughs, communicates, has likes/dislikes, and plays, just like any child his age. He has a lifetime of potential. Get out in the world and experience the beauty of people of all abilities before you make such a denigrating statement.

Renee November 24, 2009, 10:38 AM

I do not think children born with Down Syndrome will disappear completely at any point. There are those would not terminate a pregnancy regardless of the prognosis or diagnosis.

robert November 24, 2009, 10:39 AM

Odd that, if it were announced there were a genetic cure for Down’s Syndrome (or Cystic Fibrosis), the story would be nothing but positive. But because it involves abortion, the angle is that we must somehow preserve the Downs mutation for all eternity?
No offense to people with Down’s syndrome or the parents of kids with Down’s syndrome: It’s a noble struggle, and I grew up with friends with Down’s syndrome. But I find the holier-than-thou stance taken here to be quite offensive. Abortion is never a pleasant experience, but neither is bearing a kid born with holes in all four chambers, no matter how charming it may seem when they’re four.

mymari November 24, 2009, 10:52 AM

Robert is exactly right. I can’t imagine a cure for a defect or disability being anything but positive. I for one am extremely bothered by the anti-choice slant the author seems to take in the article. And anyone who wants to argue that women shouldn’t have the right to choose whether to carry children with Down syndrome to term and uses the word “God” in the argument can stop talking now, because the discussion is over. “Logic” indeed.

Gail November 24, 2009, 11:00 AM

The troubling thing is that the decision to terminate is based on the fear that your child *might* be a burden, *might* have health issues (beyond the repairable heart you already may know about - key word - repairable), *might* not be independent. All of these things come with ANY pregnancy. You end a life based on possibilities. I had a baby based on the possibilities! My older child was born with Trisomy 21 (I knew prenatally, my younger child with no issues. They are both awesome incredible kids - and the possibilities are stll endless for both of them.

Kathy November 24, 2009, 11:12 AM

Interesting point by Robert. I’ve never thought of it that way, but he is absolutely right.
The most important thing is that women are INFORMED. Beyond that we have to trust women to make the best decision for their own family, whatever that decision may be.

Gail November 24, 2009, 11:17 AM

Also - my own prenatal experience was not one of the doctor/genetic counselor giving me complete up to date information in a neutral manner. They went so far as to tell me someone else terminated a DS baby that very week. It really is a personal decision, but there was a definite sway on termination in my experience. The thought never occurred to me. The fear I felt that day - terror really - was horrible. And the reality that is my life with my 6yo w/DS is worlds away from any of that. I am so thankful for her. And I am certain the experience of raising has made me a better parent to her sister as well.

ProudMommy November 24, 2009, 11:18 AM

How can you *not* use the word “God” in a discussion about whether a woman should “choose” to carry any child to term? But this is where pro-choice and pro-life digress, isn’t it?

nutmac November 24, 2009, 11:51 AM

I am a Christian and I find “accept the hand you’ve been dealt with” to be a flawed view. Where do you draw the line? If you or your family becomes very sick, wouldn’t you want to consult with the doctor? Is it a God’s will when a child dies from a flu?

Don’t get me wrong. I have nothing but respect for parents with down syndrome child (or other birth defects). But at the same time, not all parents or parents-to-be, are prepared to do the same. Being parents require a great deal of responsibility and for many, raising a kid with birth defect is more than what many can bear.

Nikki November 24, 2009, 11:59 AM

Dear ProudMommy, Your question “How can you *not* use the word “God” in a discussion about whether a woman should “choose” to carry any child to term?”
Because not everyone believes in “God” and just because you choose to doesn’t mean he really exists. It’s just a superstition you choose to believe in so don’t push it on others.
I wish more people used Logic.

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