The amount of genetic screenings suggested to prospective parents in prenatal care has grown dramatically over the years. From cystic fibrosis to sickle cell anemia, pregnant parents may find out before birth if their child has a genetic disorder, but then what? Given the prevalence of genetic screenings, researchers were shocked to find the incidence of Down syndrome has actually increased by 31 percent over the last 24 years.
The new study published in Pediatrics “aimed to estimate the prevalence of Down syndrome (DS) among children and adolescents aged 0 to 19 years in 10 regions of the United States.” Along with increase in births of babies with DS, the authors found the “prevalence at birth significantly increased among births to older mothers (AAPC: 1.9%; P < .0001) and decreased slightly among births to younger mothers (AAPC: –0.6%; P = .0007).” It has long been known that maternal age over 35 increases the risk of DS.
NPR explains,it is not just older parents causing the increase, but people with DS are living longer lives, according to the study’s coauthor Dr. Adolfo Correa:
Correa says the most likely reason for the increase is that women wait longer to have children, which increases the chances of a child being born with Down syndrome. “The prevalence of Down syndrome is five times higher among births to women who are 35 years of age and older,” says Correa.
But there may be other reasons. One, which shows up in the study, is that children with Down syndrome are leading longer, healthier lives. And that may encourage a pregnant woman, who learns she may give birth to a child with Down syndrome, not to terminate a pregnancy.
In fact, the median age of death for a person with DS has increased from 25-years-0ld in 1983 to 49-years-old in 1997. Given these results, the researchers expect the occurrence of DS will continue to grow in the future, even with the possibility that Down syndrome may be treatable in utero.
For me, natural parenting includes embracing nature’s anomalies. When pregnant, I declined genetic screenings knowing I would not chose to abort a child because they were not “normal”. This was the right decision for me, and I do not judge others who make a different choice. In the end, my second child was born with several issues that qualify him as “special needs” with a possible genetic cause.
Recently, I took my son to see a pediatric neurologist. I was told we could do genetic testing to find out the “why” of his verbal apraxia, which makes speech difficult for him. When asked what the purpose of such testing would be, the doctor gave one reason that it might be important information if we were to have more children or for my children to know when they decide to start families. At first, I accepted this answer as reasonable, but then I thought about it. Is my son’s life not as precious as someone who has “normal” needs? Of course, I would love for my son not to have had open heart surgery as a baby or struggle with expressive language today, but he is my sweetheart and I can’t imagine life without him. Ask any parent of a child with special needs, and I think you will find that yes, life is hard, but they have learned so much from their children that the rest of the world should embrace.
This is the crux of the issue in why so many high functioning people with autism are against the organizations that are seeking a “cure”. With genetics “cure” really means – at this point in history – eugenic extermination in the womb.
On a related note I know several people with Spina bifida, well genetically they have spina bifida, what it showed up as was a “bleeding mole” in their late teens/early 20’s and a little day surgery to close up the open neural tube. If their mothers had been given “genetic counselling” they very well might have been aborted because of the image we have of spina bifida. The interesting thing is EVERYONE I know with SP if a professional dancer or nationally ranked athlete. Now, that makes up a tiny percentage of the population right? I’m neither an athlete nor a dancer so these people don’t make up a disproportionate number of my friends either. So along with this open neural pathway defect could there be some physical gift too, something to do with sensitivity???
I have a child with severe learning disabilities and a child on the autism spectrum. Both have amazing gifts that go along with these challenges. The world needs their gifts, and the world needs the lessons in compassion dealing with their challenges bring.
Obviously, genetic testing is a personal decision. But, your son’s doctor only gave you one reason for it? I’m happy that my daughter did have genetic testing (she has Noonan Syndrome) because:
1. We know that, because of her N.S., she is more at risk for certain things – so we know what to be aware of, what medical tests she should have, . . .
2. Her diagnosis has connected us to a wonderful support group of other families with adults and children who also have N.S.
Marla, the neurologist gave us other reasons too, like to see what my son might be like in 30 years, or we might find out nothing. It’s tough decision for all, and obviously each child is unique. There is no concern about other medical issues popping up for my son, and he is of average intelligence. The doc said we may or may not find a genetic cause, then we may or may not find anyone like him in the world. He did have genetic testing when he was two weeks old and his heart defect discovered; however, the tests have improved since then. Even if we found out he had some microdeletion, it would wouldn’t be something that would make me understand or change his therapy. The doc agreed he was already getting the therapy he needs. Thanks for sharing your experience!
I came to this website becuase i have been following sequenom a company trying to get to market a non-invasive downs test. After Reading the posts on this site I decided to post a message. Which I rarely do.
This is so tough sometimes to even write about my daughter sitting alone at the computer late at night, but I wanted to give support to anybody that is searching for answers that the medical community or for that fact anybody that doesnt have a child with a disability really cant relate to.
Me and my wife found out our baby had downs at 16 weeks pregant, at 20 weeks we found out about her heart problem(hole in the heart). After long hours researching ,deliberations and even a trip to the doctor to abort (doctors make it sound like you have no choice just abort and start over). We decided as adults to go on with the pregancy. My daughter had open heart surgery at 6 months old. That was extremely tough. We have worked very hard through tears, joy, speech therapist, early intervention and all the other goodies that come with a child with a disablilty. I am very lucky with the hard work and time we have commited she is doing great, Today my daughter Lauren is 8 years old ingregated in second grade and the hope and Joy of my life. I dont even want to imagine my life without her in it. Everybody has different life experiences and make there own decisions of the outcome of a downs pregancy. If you can handle all of the stress that comes with this decision you will be rewarded with tears of Joy.
Good luck to all with the biggest decision of your life.
Dont look back look forward.
PROUD PARENT OF A DOWNS BABY.
If anyone is experiencing this decision at this time feel free to email me with any questions or comments.