A statement about Down syndrome and birth defects from the World Health Organization spurred over a thousand comments on Facebook, many from enraged parents.
The statement has been corrected and WHO issued an apology.
Some parents say it’s not enough.
“If WHO can't get this right, what can we trust them with?” one commenter wrote.
In a statement on March 3 to recognize World Birth Defects Day, the WHO included a list of several common severe birth defects including congenital heart defects, neural tube defects, hemoglobin disorders and Down syndrome.
“Most birth defects can be prevented and treated with access to quality maternal and newborn care,” the WHO wrote in its original post. “Yet, every year, they cause the deaths of close to 250,000 babies within just 1 month of birth.”
According to the Global Down Syndrome Foundation, Down syndrome is classified as a genetic disorder, not a birth defect. People who have Down syndrome have three copies of chromosome 21 instead of two, according to the GDSF.
Many people commenting on the WHO’s post referred to Down syndrome as a genetic difference.
“My granddaughter is beautiful, funny, caring, smart, and perfectly perfect,” a grandmother wrote on the WHO Facebook post. “Just because she has an extra special chromosome, does not make her a birth defect!”
By March 5 the list in the WHO’s post had been removed and a note was included below the original text.
“WHO has edited its original post which, in conflating two distinct messages, unintentionally implied that Down syndrome was preventable through antenatal and newborn care,” WHO said in the note. “We sincerely apologize for any offense caused by our statement to people living with Down syndrome and their families.”
While some commenters thanked the organization for correcting the statement, many weren’t satisfied with the response.
“When I read that I (saw) RED,” one commenter said. “...My daughter is not a birth defect. There is nothing I could have done to prevent her from having DS.”
“You can’t prevent Down Syndrome…the only way is by providers pushing you to terminate which is what I was told multiple times to do,” another parent said. “Thank god I didn’t listen because I would be missing out on a beautiful baby boy who brings me so much happiness!!”
The Global Down Syndrome Foundation provides a list of myths and misconceptions about Down syndrome. According to the Centers for Disease and Control, about 6,000 babies born in the U.S. annually have Down syndrome.
“We appreciate your feedback on our post and will endeavor to ensure that our channels share information on Down syndrome moving forward, that respects the needs and desires of those affected,” the WHO wrote in their statement.
“Look at the outrage from this amazing community. It is clear your misinformation has caused unnecessary pain,” one person commented. “We are so proud of our beautiful children. Their condition is not a preventable birth defect. It is a diagnosis that is widely celebrated.”
The GDSF offers a launching pad for people to learn more about research and advocacy for Down syndrome.
