The way parents receive a Down syndrome diagnosis will hopefully be changing after years of advocacy. The American Academy of Pediatrics (AAP) is updating their guidelines on how medical professionals deliver a diagnosis, something that could be potentially life-saving.
The Down Syndrome Diagnosis Network (DSDN) originally launched on World Down Syndrome Day in 2014, with the goal of helping to support families after receiving a Down syndrome diagnosis, both prenatally and after birth. The other part of their mission was to improve how the medical community delivers a diagnosis, with an emphasis on accurate, up-to-date information. DSDN also promoted nationally recognized guidelines on how to deliver a diagnosis properly, a physician feedback program, and resources for medical professionals.
Another DSDN campaign featured letters written by parents to the doctors who delivered their diagnoses; while a small number were positive, the majority were negative. One mother said doctors referred to her baby as “it”; another woman’s doctor said her daughter would be a ‘vegetable’.
Part of the DSDN mission has included medical outreach, which again, has involved negative experiences. Heather Bradley, a member of the Board of Directors and former president of DSDN, spoke about what was said during an American College of Obstetricians and Gynecologists District meeting in Wisconsin.
“In speaking with a Maternal-Fetal Medicine specialist from Minnesota, he said that delivering a Down syndrome diagnosis was like giving someone a ‘crap sandwich,’” she wrote on Facebook. “When a new or expectant parent is just told the news their baby has Down syndrome and the first words are ‘I’m so sorry’ or ‘When should I schedule the termination?’, what is that physician saying about their CHILD? It most definitely tells them that their child IS a ‘crap sandwich.’”
One survey found that just 11% of women reported having a positive prenatal diagnosis experience, while another survey found that 13% of doctors admitted purposely overemphasizing the negative aspects of Down syndrome in an effort to pressure parents into abortion.
But the years of hard work and advocacy is slowly paying off. The AAP’s new clinical report includes updated guidelines on how physicians should deliver a diagnosis. Families are to be congratulated (no more apologizing for a child’s existence), to refer to the baby by name, and to make sure a support person is there for the parents during the discussion.
Physicians are also told to leave out their own personal biases, to use up-to-date and accurate information, to use person-first language, and to connect parents to local support groups and resources. Doctors are also told to emphasize the positive aspects of Down syndrome, including improved medical outcomes and the fact that people with Down syndrome and their families overwhelmingly report being happy with themselves and their lives.
When it comes to prenatal diagnoses, doctors are to include prenatal care considerations, and to take a “non-directive” approach to discussing options; in other words, no more assuming the parents want an abortion, making appointments without their permission first, or pressuring them into abortions.
“For [EIGHT] YEARS we have been working with health care professionals to improve the diagnosis experience for families. We were steadfast in sharing the stories of our DSDN families with medical professionals, so they knew what the current realities were and to ask them to embrace and advocate for using an accurate, up-to-date, unbiased approach to sharing the news of a Down syndrome diagnosis. We specifically asked for prenatal medical care guidelines for a Down syndrome pregnancy, and to connect families to national and local support organizations as soon as possible,” DSDN Founding Director of Medical Outreach, Jenny Di Benedetto, said in a statement, adding, “We made a real and tangible change in the way a Down syndrome diagnosis is going to be delivered. Us. This group of moms who never gave up. For [EIGHT] YEARS we advocated and this week, when we were least expecting it, the medical community showed us that they listened. They heard us, they agreed with us, and they are advocating alongside us.”
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