Will The Down syndrome Children Disappear?

[lightsoflove]

 

This is the incredibly provocative question asked by a Children's Hospital Boston researcher in a recent article published in Archives of Disease in Childhood.

Given the new prenatal tests available to mothers, the author, Brian Skotko, asks, are we entering an era where slowly Down Syndrome babies will begin to be born in dwindling numbers? And is this, he asks something that we as a society would even want to happen?

As covered in the Washington Post, Skotko provides some interesting data: "in the USA, there would have been a 34% increase in the number of babies born with DS between 1989 and 2005, in the absence of prenatal testing. Instead, there were 15% fewer babies born [with DS], representing a 49% decrease between the expected and observed rates."

This difference between what is expected and observed is not likely to change, but only increase when some 92% of women who know their fetus has Down syndrome choose abortion. And as testing becomes more sophisticated and more reliable, this number may increase as more women know even sooner and may choose this option given more time to choose it.

But what will our society lose if all the Down syndrome children disappear? There will certainly be a thread of our humanity that would be lost. Moreover, I doubt that there will ever be a time when Down syndrome is ever completely gone from our population. 100% of women will never terminate their Down syndrome pregnancies--nor should they. Their is a richness and fullness that raising a handicapped child brings to parents' lives and for some parents that is what they wish to have.

So will the Down syndrome children disappear? No. But will they dwindle in number? Yes, due to advances in prenatal screening and genetics and parental choice. And yes, we will lose something for having fewer Down syndrome children and adults among us......Summer Johnson, PhD

After prenatal testing, Boston filmmaker Melanie McLaughlin faced the likelihood that her 12-week-old fetus had Down syndrome, or a heart defect.

Melanie McLaughlin, a Boston documentary filmmaker, decided to continue with her pregnancy...

Melanie McLaughlin, a Boston documentary filmmaker, decided to continue with her pregnancy after learning daughter Grace, pictured between her two siblings, had Down syndrome. She was convinced after meeting another family raising a child with the condition.

(Courtesy Melanie McLaughlin)

She prayed for the heart defect. Grace, now 2, was born with both: trisomy 21, or Down syndrome, and holes in all four chambers of her heart, which were repaired shortly after birth. "I fell in love with her and handed her over to the doctor for surgery not knowing if I would get her back," McLaughlin said. "I was swearing to the powers to be that I didn't mean it, I was OK with the Down syndrome."

McLaughlin said she realized what a "horrible wish" she had made for her child. "I was so naive, with no experience with anyone with Down syndrome," she said. "I got a huge education about that later."

"An estimated 92 percent of all women who receive a prenatal diagnosis of Down syndrome choose to terminate their pregnancies, according to research reviewed by Dr. Brian Skotko, a pediatric geneticist at Children's Hospital Boston. Birthing trends worldwide show that women are waiting longer to have children and advanced maternal age is associated with increased risk of having a child with Down syndrome. The number of Down Syndrome cases is declining enough in the United States to raise concerns that research funding to study the congenital condition will dry up. There's also worry that more people will deny themselves what some call the "gift" of raising children with Down syndrome.

Down Syndrome Myths Drive Decision

And without knowing what it's like to raise a child with Down syndrome, many women will make their decisions based on misinformation -- and myths -- about the disorder, researchers say.

Nina Fuller's two daughters have Down syndrome: Tess, who is 15, and younger sister Hope, 6. Her fears about having a child with a developmental disability "never materialized," she told ABCNews.com.

(Courtesy Nina Fuller)

The genetic diagnosis often comes as a shock, and many people assume that raising a child with Down syndrome will be fraught with heartbreak.

But McLaughlin was lucky to be connected with First Call, a program sponsored by the Massachusetts Down Syndrome Congress, which introduced her to a family with a 5-year-old girl who has the disorder. "She played hide and seek, and she kept jumping out, telling us where she was hiding," McLaughlin said. "She was amazing. I was thinking she would be sitting in a chair unresponsive and drooling. "Actually, she was much like our other children," McLaughlin said. "We thought, maybe we can go forward."

McLaughlin said she worried about how the child would affect her siblings and the marriage, and who would look after her when she and her husband died. But according to a study by Skotko, whose sister has Down syndrome, siblings are patient and compassionate. As for the marriage, some couples do experience stress in raising a disabled child, but many grow closer.

"I am concerned about mothers making that informed decision," he said. "Are they making it on facts and up-to-date information? Research suggests not, and that mothers get inaccurate, incomplete and sometimes offensive information." One Connecticut mother who terminated her pregnancy two years ago after a Down diagnosis said her doctor "didn't paint the brightest picture." The news was devastating, said Laurie, a 37-year-old saleswoman who did not want her last named used. "We truly felt that we were falling apart." She learned she was carrying a child with Down syndrome after having difficulty getting pregnant with her second child, and then a miscarriage. It was the right decision for her family, she said.

"After much soul-searching, we decided to terminate the pregnancy at 14 weeks," Laurie said. "We had a beautiful, healthy baby girl almost a year later. I think about our unborn baby girl quite a lot and only recently was able to get rid of the early ultrasound pictures of her." And although she had never met a child with Down syndrome, she said, "I don't know if I was a strong enough person to raise a child like that."

Dr. Lewis Holmes, head of the genetics unit at MassGeneral Hospital for Children in Boston, said about 80 percent of women who learn before 24 weeks that they are carrying a child with Down syndrome choose to end the pregnancy. But Holmes is seeing an increasing number of women who simply do not want to be screened. "They say thanks, but no thanks," he said.

Many families who were anxious upon diagnosis say their lives have been enriched by deciding to continue the pregnancy. Such was the case with Lisa Aguilar of Hemet, Calif., whose 7-year-old son has Down syndrome. "I decided to keep him, no matter what," said Aguilar, a 43-year-old who is pregnant with her fourth child. "He is the happiest, kindest soul I have ever met. Daniel has taught me some valuable lessons about acceptance and love and being more compassionate." Studies have shown that families do cope and siblings learn important lessons in patience and empathy for others.

"I love Grace and her Down syndrome and everything about her," she said. "I prided ourselves on our intellect. I had a boy and a girl and a handsome husband who is a hard worker. All that outward stuff I thought was important, but I don't find it so important today -- more that is a gift."

"I do feel women have their own choice, but they don't realize what they have given up," she said. "What if we don't like brown eyes anymore? What have we lost and what does Down syndrome bring to society that we lose along the way?"

[VeronicaTex]

Jan. 22, 2011 at 11:43 AM

My Gracie, a Down Syndrome child of 17, was a complete surprise to me and my husband...I had declined the amniocentesis, because at age 39, first pregnancy, I didn't want to risk anything....However, had I known..abortion NEVER would have entered my mind...

When she came...I was devastated....It went against all my dreams of having a child I could share my life with...It went totally against my grain of having been a teacher...I was depressed, seriously for a year...My expectations had to change...I had to learn to adjust and through time I have.....

God works in such mysterious ways...He knew I would, despite my breaking heart, encourage her from the beginning...starting with the 11 days she spent, failure to thrive from the beginning, in NICU....that she could do it....He knew I could and would do it!!!!     He knew she and I both had fighting spirits and we would as daughter and mother grow together.: she already in her innocent manner already knowing God and I, would learn from her more about Him and the way He would want me to live on this earth....The learning continues....

I could write volumes about what having this precious angel means to me....However these thoughts are what that best explains how I feel..."God loved me so much to send the very best,, and that I have been humbled and am now honored to be graced with her presence.....

Thank you, my heavenly Father,  for my grace from the sky.. Graciela Faviola.....

 

[jjamom]

Jan. 22, 2011 at 12:36 PM

I was incredibly blessed 5 years ago when my son Alex was born.  I had "non-invasive testing" done, no amnio.  Nothing showed up.  I know that was divine intervention.  I know I would have struggled with decisions and stress and felt pressured by doctors (who I now know have NO clue about the BENEFITS of raising a child with DS and I truly feel that they should refer prospective parents to other parents who have been there if they truly want to relay what it's really like).  I was incredibly blessed with a beautiful, happy, caring, fun-loving, and wonderful son.  He is the light of my life and the best blessing I never realized I needed so much; but God did!  My son makes the world a better place, just by being in it!