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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
Gigohead  November 24, 2009, 12:27 PM

Folks, I NEVER said there was no viability on Downs. So go back and read what I wrote. I said Trisomy — Never stated it was 21, since there are a few children with different levels of Trisomy with the severe cases, the babies are not viable. Such as in the case of my fellow chat board member, WHO BY THE WAY I JUST LEARNED TODAY, LOST HER DAUGHTER EARLIER THIS MONTH. Baby, only survived a few weeks.

So for the poster whose son is alive with Trisomy. God bless you. Unfortunately it was not the same fate for the gal mentioned above.

Pamala November 24, 2009, 1:50 PM

If my prenatal tests came back stating the baby I’m carrying right now had DS I would terminate. I already have one child with a chronic medical condition, and DS is far too much to take on right now. I would like to think I could do it, but I just know I couldn’t. If this baby turns out to have the same chronic condition as my daughter, which is very mild, I’ll have no problem going through with having the baby. But something as serious as DS, I couldn’t put a child through that or my family through that. Sadly it’s just how I feel. I have to wonder why the body doesn’t do the job it’s supposed to when dealing with these types of defects. This is why miscarriages happen so that these abnormalities don’t occur.

Ayliea November 24, 2009, 1:54 PM

Why doesn’t it surprise me that you won’t post my comments?

Ayliea November 24, 2009, 2:18 PM

Obviously you don’t want the whole story told since you won’t post my comments to the story - which is just a complete set of the answers to Rhonda’s questions. Sad that your website won’t tell the whole story. What scares the editor’s of momlogic that they are afraid to publish my entire interview with Rhonda? Your readers can read it here: - if you aren’t afraid to let your readers judge for themselves, you WILL post this link or my full interview with Rhonda.

Working Mama November 24, 2009, 3:11 PM

Ayliea- I read the full transcript of your interview and I’m not sure what you’re so concerned about. The article seems pretty sympathetic to moms who have had to make the difficult choice to terminate a pregnancy because their fetus has DS. Did you really think momlogic would run your entire interview? Just because your entire quote wasn’t used doesn’t mean it’s taken out of context. I think you should give the readers more credit about drawing their own conclusions.

Ayliea November 24, 2009, 3:16 PM

Some of the important questions from Rhonda’s interview posted one at a time with my complete unedited answers:

6) Can you tell me a little bit about the pregnancy that you terminated. Were you trying to get pregnant? How far along were you before you learned that there were complications? No, I was not trying to get pregnant - as mentioned above I had just gone through treatment for endometriosis. I never even knew that I had endo; if I had known, I would have done something about it years before I did, because I did want children - I just never thought I could have them. I was not on birth control and I was not “Not trying” - I just couldn’t get pregnant. (My complete story is published in the book “Our Heartbreaking Choices” if you are interested.) I was 17.5 weeks when I got the results from the amnio.

Jen November 24, 2009, 4:51 PM

The problem with articles like this is that they are based on opinions, often strong ones, about beliefs and what people think is the *right* thing to do. When a woman chooses to terminate a pregnancy because of a poor prenatal diagnosis, it is for THAT woman and her partner (if there is one) to decide what will be best for their entire family - which does include the very ill baby inside her. Until each of us will walk in the shoes of THAT woman, we are certainly entitled to our opinions and beliefs, but we are not entitled to tell someone else what to do. I do find it interesting that the author of this article, Ronda Kaysen, contemplated abortion of her child, not because he had a terminal illness or even Downs Syndrome. She almost chose to abort her baby because it wasn’t the “right time” as she put it. She *chose* to keep her baby. That was the right choice for her. Walk in their shoes, and then speak of your experience.

Mom November 24, 2009, 4:54 PM

I have a six year old with DS. Just six years ago - in a hospital outside a major metro area - I was terribly mis-informed about my childs potential. Luckily, I decided to let fate take it’s course - and all six years have been joyous - yes it is extra work, therapy etc.but well worth it.

I don’t judge those who choose termination- but yes I volunteer with our local support group and I know most mom’s with a pre-natal diagnosis are still misinformed in this day and age.

Also, who is to say your child will not develop autism, chilhood cancer or someother disorder - bringing any child into this world is a risk

Karen Bannan November 24, 2009, 5:41 PM

Beautiful story. Balanced, informative, and compassionate. Personally, I would not abort a Down Syndrome baby. Still, I feel for these families, and for their decisions. There is no right or wrong answer here. I am just glad I never had to face such a decision myself.

C November 24, 2009, 6:32 PM

I would hate for a pregnant mom of a disabled baby to be forced to terminate, and I would hate for her to be forced to carry to term. It’s all about the freedom to choose. It sucks that anyone feels they’re being judged by anyone else, because it’s not someone else’s choice to make.

I work with disabled children. I love them all. I wish every one of them had a chance at a life without the struggles they endure. I wish their parents and siblings didn’t have to endure all of the stress. I understand why parents choose each path.

tennmom November 24, 2009, 9:09 PM

Who or what organization came up with the term “Down Syndrome Advocate”? Who could or would advocate suggesting an expecting mother to give birth to a child likely to never be able to care for themselves or being on constant guard of the possibility of losing that child due to major health conditions?
I’m sorry, but I would terminate a pregnancy if there was a strong possiblilty that my existing, healthy children, husband, and I would have to live on edge wondering if the DS child would ever be a self-sufficent adult or live day to day hoping the child didn’t die of complications. I know a family in that situation. The parents have 8 older children, but which one of them should be expected to step up and take over the care of child #9 if she happens to out-live her parents? In my opinion, none of the other 8 should be placed in that position.
Judge me if you chose, but I believe in the common good for the majority of the members of my family.

Anonymous November 24, 2009, 10:01 PM

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Maroon15 November 25, 2009, 4:07 AM

You cannot make a decision like this based in a vacuum! You have to consider what is best for the unborn baby but also for the existing family. You never read about the severe medical issues most T21 children have IF they even survive to be born and live after that. Yes, we cannot predict the future of our children, even if they are healthy and happy now. But in the case of a diagnosis we can predict somewhat the future of his child and subsequent future of the family. It should be a choice for the family and no one else should decide this for them. Period. And those of you who judge…READ your bible a little better about that!

Robin November 25, 2009, 8:23 AM

Every child is a coin flip. My brother was born perfectly healthy but at the age of two had a massive epileptic seizure and a stroke that caused perminent damage. For the rest of his 38 years of life (he died at Thanksgiving 4 years ago after his airway closed off during a seizure) he lived life as a 13yo boy. He suffered massive seizures.
Does that mean he didn’t have a life worth living? No. He lived the life of a wonderful older brother, son and uncle. He enjoyed every holiday. Because he was here and my mother was an advocate great strides in treament, management and social care were achieved. When he was injured they told my mother he would be “selling pencils on the corner”, he graduated from High School, kept a job and managed a life almost on his own in an assisted facility.
If a child is going to be born so impaired that they will have only a short life on machines in pain that is a situation that needs a lot of thought and soul searching and I can’t say that I know what I would do. In the case of a viable baby with a handicap I just know that I personally could not abort, knowing what a wonderful life I could be giving up.

Emmy1916 November 29, 2009, 3:01 PM

My problem with the comments here is that so many people seem to equate termination with finding a cure for Down’s. The assumption of a cure for a disease is that the person who has the disease will continue to live, without the disease, not die so that the genetic defect that produced the disease will not continue. If that’s the sort of cure people are after, then perhaps we should screen/abort all fetuses who test positive for any health problems? That would be the logical solution to the problem. Another solution would be to genetically screen all married couples in order to determine their ability to have healthy offspring, and prohibit those who have a history of genetic diseases from having children. These two scenarios are intended to be hypothetical, just something for everyone on here to consider. A final thought: how would you all feel if someone suggested that a better cure for breast cancer would be to allow the women to die and eliminate the risks of passing along the genes?

Anonymous November 30, 2009, 6:54 AM

“how would you all feel if someone suggested that a better cure for breast cancer would be to allow the women to die and eliminate the risks of passing along the genes?”

That is a moronic and illogical statement. You are talking about killing a living person as opposed to terminating diseased cells (the fetus).

cindy January 29, 2010, 10:50 AM

Think people were confused by this:

The reason to abort wasn’t simply because the baby had Down’s Syndrome. It was because of the coexisting heart condition. A Down’s baby would usually not be eligible for transplant and would more than likely not survive the multiple surgeries required to fix the heart problem.

Down’s Syndrome alone would be heartbreaking but possibly manageable (depends on the individual parent/parent-to-be). But the idea of them being born only to die on the operation table? Of having a baby whose short existence would consist of hospital visits and pain?

Are you guys so inhuman that you would rather stroke your own self-righteous egos over how you “didn’t play God” (except you are, too, don’t try to deny that) and how great you are because *you* were able to endure this great trial? Which is nothing compared to the trial you’re forcing your baby to endure for your own self-satisfaction.

momofboys February 16, 2010, 12:34 PM

I have a son with down syndrome and a heart transplant. He is a wonderful child who is loved by all who know him. His diagnosis of DS and severe heart problems were devastating, no doubt, but we are truly blessed to have him in our lives. it is too easy for parents to abort when they hear the diagnosis of DS. They should ask themselves, what if they have a typical baby who is later diagnosed with autisom or some other disability that is not seen at birth. Will the get rid of that child, too? When you choose to be a parent you have to accept what you are given, and do the best you can. Sometimes situations that appear to be disasters turn out to be gifts.

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