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.