No parent should ever feel like their baby's life starts out with a death; the death of their dreams for the future, the end of their hope for a happy, healthy child. But it happens every day, because parents don't have immediate access to the help or reassurance they need to overcome the myths and misconceptions surrounding Down syndrome in our society.
Physicians do not receive adequate training on Down syndrome. They do not fully understand the diagnosis and its implications for a child and family. Many do not know how to properly give this diagnosis and they often do not provide new parents with needed resources, support and information.
I, Dr. Julia Kinder, feel I can say this for two reasons, First, I am a family practice physician and mom to eight-year-old Ella, who has Down syndrome. My medical training did not prepare me for understanding what it would be like to have a child with Down syndrome or how I needed to care for her. Second, I have counseled hundreds of new parents of babies with Down syndrome who are of the same opinion.
Numerous are the examples of the inappropriate comments made by the medical community to new parents of babies with Down syndrome. Here are two examples:
“Perhaps this one is not a keeper.” -contributed by Darla Sasserman-Haskell, mom
“I don’t know what I’d do if that were my son - probably go out to my back 40 acres with a gun and shoot myself or something.” -contributed by Becky McDaniel Hailey, mom
Medical schools are resistant to adding this training to their curriculum. It is my understanding they feel the occurrence of babies born each year with Down syndrome is not high enough to warrant this education of all future physicians. They do not realize that the birth rate would be higher if 90% of pregnancies with a fetus with Down syndrome were not terminated - a number that I believe is due to lack of accurate and complete information. They also do not realize the far-reaching implications of this diagnosis into our society, influencing how we view and accept people with disabilities.
Families of children with Down syndrome are entitled to receive accurate, up-to-date, and complete information on the diagnosis from their physician. These families should not be subjected to negative, personal opinions from physicians who do not fully understand the implications of having a child with Down syndrome. These families deserve to be given the diagnosis in a caring and supportive way which allows them to move beyond difficult emotions which may prevent bonding with and caring for their newborn. These families require resources from their physician immediately after the diagnosis is made in order that they may begin properly caring for their newborn.
Babies with Down syndrome deserve to be welcomed into this world with acceptance and joy, just like any other newborn. Babies with Down syndrome require that a foundation be in place as soon as possible after their birth for their care and development, in order to minimize any health or developmental concerns and to maximize their potential. Their entire future rests upon the attention they are given in those critical first few weeks and months.
To remedy this we are calling for required training, at a minimum of two hours, of all 3rd year medical students in the areas of updated and complete education on Down syndrome, how to productively give the diagnosis, and how to provide support and resources for families.
Please join my efforts to ensure all medical students receive the proper training regarding Down syndrome.
To stay up-to-date on this topic, please visit my website at www.juliakinder.com
1. Mandatory Lecture and Workshop for all 3rd year medical students on the topic of understanding Down syndrome, knowing how to properly give this diagnosis to parents, and being able to provide support and resources to new families.
2. Establishing a standard of care for families receiving the diagnosis of Down syndrome in their fetus/newborn.
Request: The undersigned call for required training, at a minimum of two hours, of all 3rd year medical students in the areas of updated and complete education on Down syndrome, how to productively give the diagnosis, and how to provide support and resources for families.
1. Down syndrome is the most common chromosomal variation, occurring in approximately every 1 to 800-1,000 live births in the United States. http://www.cdc.gov/ncbddd/birthdefects/DownSyndrome.html
2. 5,429-6,000 babies are born with Down syndrome each year in the United States. http://www.cdc.gov/ncbddd/birthdefects/DownSyndrome.html
3. 400,000 families in the United States have a child with Down syndrome. http://www.ndss.org/Down-Syndrome/Myths-Truths/
4. 90% of pregnant women who find out their baby may have Down syndrome (these are not all confirmed by further testing such as amniocentesis) will choose to abort. This decision is based on incomplete, inaccurate information which leads to unfounded fear. The decision to terminate should be based on up-to-date and complete information, delivered in a non-biased manner by medical professionals. http://www.ncbi.nlm.nih.gov/pubmed/10521836
5. Public Law # 110-374 requires all medical professionals have accurate information on Down syndrome to present to new families. http://olpa.od.nih.gov/actions/public/110session2/pl110-374.asp
6. Early Intervention for babies and children with Down syndrome has been shown to improve development and in some cases even increase I.Q. Scores. It is imperative for Early Intervention to start as soon as possible after the baby is born. This intervention is delayed if parents do not receive from their first points of contact - the medical community - the phone numbers, websites, and other information needed to begin the process of obtaining Early Intervention. Additionally, if parents are in a negative emotional state, which is often caused by the unacceptable methods in which the medical community inform the parents of the diagnosis, then they are unable to begin the immediate care needed by their newborn. http://idea.ed.gov/part-c/search/new and http://www.rand.org/pubs/research_briefs/RB9145/index1.html
7. Physicians report feeling uncomfortable counseling families on the diagnosis of Down syndrome.
8. Physicians report receiving no training during their education on how to give the diagnosis of Down syndrome or how to provide support to new parents.
Summary: Babies with Down syndrome deserve every opportunity to reach their full developmental potential, to be nurtured and loved by their families, and to be accepted fully into our society. The diagnosis of Down syndrome is a medical diagnosis, discovered by the medical community, who then have the duty to help new parents understand what they need to do to maximize care of their child. Doctors should understand babies with Down syndrome are first and foremost babies, above and beyond their diagnosis. Let’s establish a standard of care for babies with Down syndrome.Is it acceptable that families of newborns with Down syndrome are sent home from the hospital without so much as a pamphlet of information? Can you think of any other medical diagnosis in which the medical community does not provide follow-up care?