We at DownSyndromePregnancy.org challenge you to make a personal action plan so that the day the new test will launch expectant parents across the nation will have the support and information they need to truly understand Down syndrome.
Step 1: Educate yourself.
Learn about the tests. There are a variety of companies developing new tests, and it is our understanding that Sequenom is at the forefront. The goal is to avoid invasive testing and check the mother’s blood for fetal DNA that will indicate Down syndrome, but the technology is complicated. You can find a thorough explanation of prenatal testing technologies and bioethics hosted by the Down Syndrome Guild of Greater Kansas City here.
Learn why our expectant parents will appreciate tests. Many of our expectant parents struggle with the decision to do invasive testing due to the small risk of miscarriage. Yet, testing can offer many benefits to a baby with Down syndrome, and to the expectant parents. Many of us took the risk of invasive testing in order to obtain those benefits. They include:
- settling an anxiety-causing question
- better prenatal care, such as a fetal echocardiogram
- time to adjust and grieve now, so that parents are happy and adjusted when the baby is born
- time to learn about Down syndrome and seek out a support structure
- possibly rethinking birthing plan & place of delivery, such as delivering at a hospital with a NICU
- preparing friends and family
- having a better newborn experience than if the baby is diagnosed at birth (Dr. Skotko’s research)
- planning for child-care and breastfeeding with Down syndrome in mind
- checking on quality of health insurance and switching if necessary
- learning about local resources, including the children’s hospital, the local Down syndrome group, and the local Down syndrome clinic
Learn about resources for health care professionals. There are several resources available to health care professionals addressing the way in which to deliver a diagnosis. Familiarize yourself with these materials and inform your health care providers and local groups.
- Lettercase.org offers a bi-fold brochure for medical providers that gives a synopsis of research and studies about how best to deliver a prenatal diagnosis. The brochure offers references for resources specifically for medical professionals.
- Drs. Skotko, Kishnani, and Capone have written an article in the American Journal of Medical Genetics advising medical professionals how best to deliver a Down syndrome diagnosis. You can access this article from Dr. Skotko’s website.
- Brighter Tomorrows offers a virtual interactive tutorial for medical care providers on how to deliver a diagnosis, featuring various scenarios. There is also a refresher version for those who revisit the site.
- The National Down Syndrome Congress (NDSC) has a physician’s guide to delivering a diagnosis of Down syndrome.
- Your local Down syndrome organization may also have a medical outreach program, present at “grand rounds” at local hospitals, or host guest speakers to address medical care providers. Become familiar with the services your local group provides, or the successes of other local groups.
Learn about resources for expectant parents. There are resources out there specifically for expectant parents which will inform and support them.
- Lettercase diagnosis booklet “Understanding a Down Syndrome Diagnosis” has been revised with feedback from representatives of the National Society of Genetic Counselors, the American College of Medical Genetics, the American Congress of Obstetricians and Gynecologists, the National Down Syndrome Society, and the National Down Syndrome Congress. This booklet has been selected as the national gold standard by the Kennedy Foundation First Call committee and should be given to expectant parents learning of a diagnosis. This is a diagnosis booklet – the first tier of support to all parents receiving a prenatal diagnosis. (English and Spanish)
- DownSyndromePregnancy.org provides support to expectant parents preparing for the birth of a baby with Down syndrome. Our book Diagnosis to Delivery: A Pregnant Mother’s Guide to Down Syndrome is downloadable. We have a blog, host a discussion board on Baby Center, host group support phone calls, and provide support via private messages and e-mails. Our goal is to provide well-researched, practical information, daily support, and reflections on specific topics from experienced parents. This is a set of pregnancy resources – the second tier of support for parents moving forward after a prenatal diagnosis.
- Brighter Tomorrows provides a variety of informational materials to expectant parents, available on-line as free downloadable documents. (English and Spanish)
- The National Down Syndrome Adoption Network (NDSAN) provides information to birth families who may be seeking alternatives to parenting as they prepare for the arrival of their child. Adoptive families are located all across the United States and Canada. To contact Coordinator Robin Steele please call 888-796-5504 or email her at firstname.lastname@example.org.
- Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Our Lives. Edited by Kathryn Lynard Soper, this collection of personal stories is a source of validation and inspiration to parents facing a new diagnosis. Honest and beautiful, many stories focus on prenatal diagnosis.
- “What Parents Wish They’d Known: Reflections on Parenting a Child with Down Syndrome” (free downloadable booklet edited by Kathryn Lynard Soper available from Woodbine House)
- Your local group may also have a prenatal outreach program designed to provide support to expectant parents.
Read the resources. Read them thoroughly, understand the differences between them. Put the websites on your “favorites” and add them to the resource list on your websites and blogs. When people are looking for information, you should be able to easily guide them to these resources and accurately explain the purpose and audience of each resource.
Attend webinars and lectures. Many organizations, such as NDSS and Down Syndrome Affiliates in Action, host webinars or in-person presentations by informed community leaders which will help you understand the issues involved with prenatal diagnosis. There are also radio interviews now and then. Some are available as podcasts:
Nancy Iannone, Executive Director, Down Syndrome Pregnancy, podcast
Dr. Brian Skotko, M.D., M.P.P., clinical fellow genetics, Children’s Hospital Boston, podcast
Learn about what is facing expectant parents. Beyond the “issue” of prenatal diagnosis, learn about the challenges that expectant parents face which are specific to pregnancy. What worries do they have? What information do they need? What kind of support do they need? You can learn this by reading our pregnancy book and our expectant parent’s questions on the discussion board (link listed on DownSyndromePregnancy.org).
Step 2: Donate.
Yes, donate. A little goes a long way when people join forces. DownSyndromePregnancy.org has many projects planned which need funding, like booklets for friends and family. In addition, Lettercase plans on being a presence at national or regional medical conventions, engaging in important ongoing dialogue with the medical community, and arranging nationwide distributions of booklets. Further, NDSS funded the initial distribution of the Lettercase booklets to the medical community. All of these organizations — and your local group — are in need of funding to further the goal of informing and supporting expectant parents. They need the investment of the community in this important work.
Step 3: Check your vocabulary.
We know discussions of prenatal testing and the ultimate statistical result can touch a very raw nerve. We understand and appreciate the passion of our community, the need to advocate and educate, and sometimes the sadness that results when a community member looks at statistics. As you talk and write about the new testing, please try to think about how you channel your passions. Will words that make you feel better cause such negative reactions that ultimately you will do more harm than good?
Don’t waste time trying to stop the train. The testing is coming, and expectant parents worried about the health of a baby will take the test. If your efforts lie in fighting against the testing, or convincing people not to test, most of your efforts will be wasted. Expectant parents have their own motivations for seeking answers, and they will not be deterred in the numbers that will make your efforts yield a large-scale change of direction. In addition, you will be perceived as “anti-information” and any discussions you have afterwards about Down syndrome will be viewed with more skepticism: you will damage your credibility.
Speak positively about resources available for expectant parents. Any discussion about testing – whether it is a casual discussion with a friend or an interview with a major network – should turn to a discussion of the resources available to expectant parents and physicians. Entities like Lettercase and DownSyndromePregnancy.org should be automatic discussion points. Awareness of the credible resources out there is key to reducing the aspect of information deficiencies that can leave expectant parents floundering after a diagnosis.
Speak respectfully of parents embarking on testing. Questioning the motivations of expectant parents who test for Down syndrome and discussing such parents negatively is, of course, inappropriate. But sometimes community members do so as they share in cyber space or with reporters. Doing this displays a lack of understanding of the complexities involved in seeking information about one’s baby, and again will identify a community member as one whose information or insight is not credible to expectant parents. Often community members make comments that they do not even realize may sound “off” to someone else. (For example, “I never found out when I was pregnant, because I loved the baby regardless.” What does that statement imply about those who found out?)
Speak respectfully of parents facing choices. Sometimes community members will characterize the motivations of those who face decisions, or who have made decisions different than ours, in ways that lump together all of these people in a negative way. Often this takes the form of characterizing all of those people as seeking “the perfect child” or similar characterizations. These beliefs have at their heart the genuine and valid ethical concerns so many parents share about how people with Down syndrome are or have been viewed or treated historically by society. However, when these valid concerns join with the classic and on-going debate in our country over choices, the discussion can turn the corner from clear ethical discussion to hot-headed debate. The discussion can quickly spiral out of control, and leaves expectant parents facing decisions feeling judged, confused, attacked, and more anxious and fearful that they were before. Again, consider the benefit of you “having your say” against the detriment of alienating your audience.
Speak respectfully of the medical community. Please do not allow stories (or your own personal experience) of a negative interaction with a medical care provider in the prenatal context to drive your discussions about the medical community. We know there have been issues. We know the research on the way a diagnosis is presented, and many have experienced a lack of appropriate information. But a solid, respectful, and appreciative relationship with the medical community is key to its enthusiastic support of providing expectant parents with a Down syndrome diagnosis appropriate information and supports. With the Lettercase diagnosis booklets and the DownSyndromePregnancy.org pregnancy materials, medical providers now have appropriate materials that do not depend on whether a locale has a Down syndrome group with a prenatal program. They have the tools which did not exist previously.
Step 4: Participate.
National level. Sign up for mailings from the national organizations (NDSS and NDSC). When the national groups ask for your assistance in contacting lawmakers, make the time to help. Place yourself on the mailing list of Lettercase.org. Provide advice to expectant parents at DownSyndromePregnancy.org, but remember the guidelines discussed above about speaking respectfully.
Local level. Offer your volunteer services to your local Down syndrome group’s prenatal support program.
Step 5: Share with your doctor
Write a letter about resources. Providing a list and contact information for the medical resources outlined above would be very useful for your doctor and likely save him or her a lot of time.
Drop off resources. Order diagnosis booklets from Lettercase and deliver them to your doctor, or assist your local group in doing so. The printed version of Diagnosis to Delivery should be available soon as well for you to give to your doctor. Explain to your doctor that the diagnosis booklets are the first tier resource for patients receiving the news, and that Diagnosis to Delivery is for patients continuing a pregnancy.
Step 6: Educate your loved ones and community.
A fully informed community member is better able to have informed and enlightening conversations with friends and family, and local news reporters. A fully informed blogger is able to write blog posts that are as enlightening as they are useful.
To access the hyperlinks in this document, visit DownSyndromePregnancy.org and click on “Resources.” To obtain a .pdf of this document to forward, e-mail Nancy McCrea Iannone at Nancy@DownSyndromePregnancy.org and ask for the .pdf of the Action Plan.
To make comments about this Action Plan, CLICK HERE.