Search Results

Breastfeeding

September 30, 2014 in Breastfeeding

Our Diagnosis to Delivery book has an entire chapter on breastfeeding which is a must read for any expectant mom who wishes to breastfeed her baby.  One suggestion for those who are preparing to breastfeed their newborn with Down syndrome is to consult with an occupational therapist or lactation specialists before or shortly after birth. What types of experts did you find to be particularly helpful, and what tips were most helpful to you?  Experienced moms, what was your experience?  Expectant moms, if you plan on breastfeeding, do you have questions, concerns, or a plan?

Children’s Hospital Boston also has a presentation, “Breastfeeding and Down Syndrome,” available for viewing which will help you if you wish to breastfeed your baby with Down syndrome. The presenter is Kimberly H. Barbas, BSN, RN, IBCLC, of the Lactation Support Program at Children’s Hospital Boston. She covers the benefits of breast milk, particularly for the baby with Down syndrome. She also covers tips for the delivery room, information about positioning (with helpful photos), pumping techniques to maximize caloric intake, monitoring weight gain, supplementation, and so much more. This presentation is a “must view” for any expectant mom planning on breast feeding.

Grandparent Stories

May 1, 2014 in Friends and Family

From Stacy Hopper (Mom):

“I was 20 years old, married for less than a year and in another state, when we found out our firstborn was going to have Down syndrome. Obviously shocked and scared, I called my mom and told her the “bad news,” and she and my fathers responded, “Okay, so what’s the bad news?”

I kid you not! My family rallied around us and researched, joined groups, and called daily with encouragement and hopeful words.

My mom came out when Josephyne was born and stayed til she was 18 days old. Sadly she had to go back home before our girl came home, but she was with her everyday until she left!

When our baby was 5 weeks old, my husband was deployed to Iraq, and Joey Grace and I were all by ourselves. My family didn’t like that so my dad and two of my three brothers drove from Missouri to Coastal North Carolina to pack us up and bring us home while he was deployed. My dad had only seen her in pictures until they pulled up in front of my house … and when he saw her for the first time, it was amazing. A complete and utter love that knows no bounds and that is palpable to anyone around. Our girl is now 10, turning 11 in November, and her absolute best friends and biggest champions would be my amazing parents. Involved in every aspect of our lives, they always make sure love and time spent is equal among their 10 grandchildren but there is something between my daddy (Papa) and my girl (Joey Grace) that no one will ever understand: true and honest love that is never ending.

I come from an amazing and large family, and no one has ever treated her any different than they would any other child, and that is all due to my parents examples in our growing up and in their reaction to our amazingly genetically enhanced girl.

Low you Nana-Bean and Papa-Bean!”

Amy Allison, the Executive Director of the Down Syndrome Guild of Greater Kansas City, which is Stacy’s local Down syndrome organization, says:

In 2002 DSG received a phone call from a grandpa to be indicating his daughter was living in another state and was just informed she is carrying a baby with Down syndrome. Grandpa was concerned and anxious to get educated about the condition and the best ways he could support his daughter and granddaughter to be. I met with Grandpa within a few weeks of his call and provided him up-to-date accurate information to help him prepare. He called me a few months after his granddaughter was born to say that his son in-law was being deployed and he was concerned, so he was moving his daughter and granddaughter to Kansas City to provide help. As grandparents go, he was the biggest cheerleader and supporter I have seen. Always proud and always looking for ways to get engaged with the DSG.

From Christy Pate (Mom):
My kids have THE BEST grandparents!

When my loved one with Down syndrome was diagnosed with AML (leukemia), we had one week to get everything in order and spent most of the next 6 months in the hospital. Since he was so young and exclusively breastfeeding, we decided it would be best if I was with him the entire time. We were able to accomplish this because Grandma set her life on the table, and stepped right into mine. She basically moved into my house and ran my household which enabled me to stay at the hospital for 6 months and my husband to continue at work without any loss of time, pay, or vacation. My older kids did great because they didn’t have to become latch-key kids or feel neglected. She was even able to manage the complications of a high schooler and a homeschooler.

I could never have been away from my home, my family, my older kids, etc. without the reassurance my mom provided by being with them. I honestly don’t know what we would have done without Grandma! My dad was behind it and gave his full support saying, “where else would she be?”
From Vickie Wood (Grandma):
I have been a special education teacher for over 20 years. It is my calling, and I love what I do. I am also a very proud grandmother of 11 grandchildren whom I love with all my heart. That said, I have to ‘fess up’ that my precious granddaughter Darcie is always going to hold a little extra special piece of my heart. Darcie was born with the rare chromosome difference Mosaic Down Syndrome. She also arrived with congenital heart defects, and we recently found out that she is profoundly deaf. Darcie has already overcome many challenges including jaundice, open heart surgery, slow growth, and feeding and digestive difficulties, but she has proven herself to be a fighter as well as a precious sweetheart full of smiles and sunshine. Our family has been enriched by her presence in our lives, and she is already changing perceptions about people with different abilities in very positive ways. She is fiercely loved and deserves all the help, encouragement, and protection we can provide. My daughter and I will be signing up for a course to improve our skills in American Sign Language so we can teach Darcie to sign and help others learn to sign so they can communicate with her. I just know that she has a LOT of very important things to teach the world!

And look here for a list of other great grandparent resources by columnist (and Lucy’s grandma), Beverly Beckham.

From Bernice Hall:

When I found out that my youngest daughter was expecting her first child, I was overjoyed. The day of Andy’s birth was eventful. I was overcome with joy. However, that joy was short-lived. We were told that he had swallowed meconium and would need to go into the newborn intensive care unit right away. It wasn’t long before we were told that the doctors suspected that Andy had Down syndrome. My first reaction was to deny that my 23-year-old could have a baby with Down syndrome because I thought that only happened to older women.

The genetic testing confirmed the doctor’s suspicion. At that point, I had to say goodbye to the baby that I thought we were having and welcome this precious little boy for the beauty of who he was. Embracing that reality came quickly and with much love.

One memory that will stay with me forever involved a riding lawn mower. When Andy was about three-years-old, my husband bought the mower. He couldn’t have purchased anything that Andy would have loved more. For a couple of years, he just rode with his Papa. Then, he was allowed to steer. Andy put more mileage on that machine just riding for fun than Papa did cutting grass.

During that time, we took him to an animal park. Our means of transportation around the park was a large tractor that pulled a flat bed covered with straw. Andy was so excited that the attendant allowed Andy to sit with him. At some point during the ride, he allowed Andy to steer. He was able to maneuver through an open gate without hitting anything. The smile on his sweet face was priceless.

Andy continues to amaze me with his computer skills and his photography talent. He patiently helps me with my computer. Best of all, I love when he puts he arms around my neck and gives me a kiss on the cheek and says, “You’re the greatest Mawmaw in the world.” Of course, the love that we share just grows stronger.

And look here for a list of other great grandparent resources by columnist (and Lucy’s grandma), Beverly Beckham.

Grandparent Stories

October 2, 2013 in

From Stacy Hopper (Mom):

“I was 20 years old, married for less than a year and in another state, when we found out our firstborn was going to have Down syndrome. Obviously shocked and scared, I called my mom and told her the “bad news,” and she and my fathers responded, “Okay, so what’s the bad news?”

I kid you not! My family rallied around us and researched, joined groups, and called daily with encouragement and hopeful words.

My mom came out when Josephyne was born and stayed til she was 18 days old. Sadly she had to go back home before our girl came home, but she was with her everyday until she left!

When our baby was 5 weeks old, my husband was deployed to Iraq, and Joey Grace and I were all by ourselves. My family didn’t like that so my dad and two of my three brothers drove from Missouri to Coastal North Carolina to pack us up and bring us home while he was deployed. My dad had only seen her in pictures until they pulled up in front of my house … and when he saw her for the first time, it was amazing. A complete and utter love that knows no bounds and that is palpable to anyone around. Our girl is now 10, turning 11 in November, and her absolute best friends and biggest champions would be my amazing parents. Involved in every aspect of our lives, they always make sure love and time spent is equal among their 10 grandchildren but there is something between my daddy (Papa) and my girl (Joey Grace) that no one will ever understand: true and honest love that is never ending.

I come from an amazing and large family, and no one has ever treated her any different than they would any other child, and that is all due to my parents examples in our growing up and in their reaction to our amazingly genetically enhanced girl.

Low you Nana-Bean and Papa-Bean!”

Amy Allison, the Executive Director of the Down Syndrome Guild of Greater Kansas City, which is Stacy’s local Down syndrome organization, says:

In 2002 DSG received a phone call from a grandpa to be indicating his daughter was living in another state and was just informed she is carrying a baby with Down syndrome. Grandpa was concerned and anxious to get educated about the condition and the best ways he could support his daughter and granddaughter to be. I met with Grandpa within a few weeks of his call and provided him up-to-date accurate information to help him prepare. He called me a few months after his granddaughter was born to say that his son in-law was being deployed and he was concerned, so he was moving his daughter and granddaughter to Kansas City to provide help. As grandparents go, he was the biggest cheerleader and supporter I have seen. Always proud and always looking for ways to get engaged with the DSG.

From Christy Pate (Mom):

My kids have THE BEST grandparents!

When my loved one with Down syndrome was diagnosed with AML (leukemia), we had one week to get everything in order and spent most of the next 6 months in the hospital. Since he was so young and exclusively breastfeeding, we decided it would be best if I was with him the entire time. We were able to accomplish this because Grandma set her life on the table, and stepped right into mine. She basically moved into my house and ran my household which enabled me to stay at the hospital for 6 months and my husband to continue at work without any loss of time, pay, or vacation. My older kids did great because they didn’t have to become latch-key kids or feel neglected. She was even able to manage the complications of a high schooler and a homeschooler.

I could never have been away from my home, my family, my older kids, etc. without the reassurance my mom provided by being with them. I honestly don’t know what we would have done without Grandma! My dad was behind it and gave his full support saying, “where else would she be?”

From Vickie Wood (Grandma):

I have been a special education teacher for over 20 years. It is my calling, and I love what I do. I am also a very proud grandmother of 11 grandchildren whom I love with all my heart. That said, I have to ‘fess up’ that my precious granddaughter Darcie is always going to hold a little extra special piece of my heart. Darcie was born with the rare chromosome difference Mosaic Down Syndrome. She also arrived with congenital heart defects, and we recently found out that she is profoundly deaf. Darcie has already overcome many challenges including jaundice, open heart surgery, slow growth, and feeding and digestive difficulties, but she has proven herself to be a fighter as well as a precious sweetheart full of smiles and sunshine. Our family has been enriched by her presence in our lives, and she is already changing perceptions about people with different abilities in very positive ways. She is fiercely loved and deserves all the help, encouragement, and protection we can provide. My daughter and I will be signing up for a course to improve our skills in American Sign Language so we can teach Darcie to sign and help others learn to sign so they can communicate with her. I just know that she has a LOT of very important things to teach the world!

From Bernice Hall (Grandma):

When I found out that my youngest daughter was expecting her first child, I was overjoyed. The day of Andy’s birth was eventful. I was overcome with joy. However, that joy was short-lived. We were told that he had swallowed meconium and would need to go into the newborn intensive care unit right away. It wasn’t long before we were told that the doctors suspected that Andy had Down syndrome. My first reaction was to deny that my 23-year-old could have a baby with Down syndrome because I thought that only happened to older women.

The genetic testing confirmed the doctor’s suspicion. At that point, I had to say goodbye to the baby that I thought we were having and welcome this precious little boy for the beauty of who he was. Embracing that reality came quickly and with much love.

One memory that will stay with me forever involved a riding lawn mower. When Andy was about three-years-old, my husband bought the mower. He couldn’t have purchased anything that Andy would have loved more. For a couple of years, he just rode with his Papa. Then, he was allowed to steer. Andy put more mileage on that machine just riding for fun than Papa did cutting grass.

During that time, we took him to an animal park. Our means of transportation around the park was a large tractor that pulled a flat bed covered with straw. Andy was so excited that the attendant allowed Andy to sit with him. At some point during the ride, he allowed Andy to steer. He was able to maneuver through an open gate without hitting anything. The smile on his sweet face was priceless.

Andy continues to amaze me with his computer skills and his photography talent. He patiently helps me with my computer. Best of all, I love when he puts he arms around my neck and gives me a kiss on the cheek and says, “You’re the greatest Mawmaw in the world.” Of course, the love that we share just grows stronger.

And look here for a list of other great grandparent resources by columnist (and Lucy’s grandma), Beverly Beckham.

Research Gaps Down Syndrome Pregnancy

October 24, 2011 in

As the area of prenatal testing advances, the number of women in post-diagnosis pregnancy will continue to rise. Because a Down syndrome diagnosis often triggers increased prenatal care, there is a great need for practice guidelines for a Down syndrome pregnancy. There are also many areas related to pregnancy which need research. We also have an opportunity to engage expectant parents in the important work involving the collection of tissue samples to benefit the Down syndrome population.

Tissue Bank & Prenatal Diagnosis of Down Syndrome

We advise expectant parents not to plan on banking the cord blood of their baby with Down syndrome for potential treatment for leukemia because the cord blood would not be used for such a purpose. However, expectant parents may be willing to have their baby’s cord blood (or placental tissue) taken for research purposes. Unfortunately, this would be costly for expectant parents, and with the potential for personal use eliminated, most parents would not incur such a cost for research. If there were a system in place where an expectant parent could have this material (cord blood and placental tissue) donated at no charge to the parents, many of our expectant parents would participate. Our organization would be able to inform expectant parents of this option.

Research Gaps related to Down Syndrome Pregnancy

We have identified various areas in need of research which are related pregnancy post-diagnosis:

1. Research tracking statistics and mapping trends, specifically:

a) after a Down syndrome diagnosis, annual statistics on the occurrences of:
i) elective terminations;
ii) spontaneous terminations (miscarriage);
iii) stillbirths; and
iv) live births (also percentage placed into adoption plan).

b) For each of these statistics, the stage of gestation would be important to note, including the live births.

2. More detailed statistics on miscarriage:

a) Percentage miscarry/ stillbirth:
i) related to stage gestation; and
ii) related to maternal age

b) Categorizing loss percentages; of those pregnancies ending in miscarriage or stillbirth, the percentage breakdown of the following:
i) no ancillary fetal health issues
ii) ancillary fetal issues which themselves do not cause loss (loss was for another reason, not the identified ancillary health issue)
iii) ancillary health issues which increase loss

3. Post-diagnosis prenatal care and impact on loss outcomes:
a) monthly ultrasounds
b) late non-stress tests (weekly)

4. Delivery plans and impact on neonate (and stillbirth) outcomes
a) early delivery (with ancillary issues, without ancillary issues)
b) sophistication of delivery facility

5. Post-diagnosis support and impact on emotional adjustment/ health
a) information
b) referral to support organizations
c) words/ attitude of health care provider
d) referral to therapist/ psychologist

6. Post-diagnosis referral and impact on neonate outcomes
a) referral/ information breastfeeding
b) referral cardiology

7. Likelihood of NICU stay
a) percentage of live births, length of stay
b) factors: automatic placement in NICU due to Down syndrome diagnosis v. separately identified medical need?

Research Gaps related to Down syndrome and Cardiology:

1. Outcomes after open heart surgery for AV Canal defect: Comparing the patients post-op who have Down syndrome versus those who do not.

2. Neurodevelopmental outcomes in patients with Down syndrome who have cardiac bypass versus those with no heart disease.

3. Airway obstruction and long term consequences related to pulmonary hypertension.

The research gaps list was created by Nancy McCrea Iannone and reviewed and/or edited by:

Dr. Brian Skotko, MD, MPP, Clinical Genetics Fellow at the Children’s Hospital Boston and author of multiple books and articles about Down syndrome; Advisory Panel National Down Syndrome Congress (NDSC); National Down Syndrome Society (NDSS), Secretary; Chair of Massachusetts Down Syndrome Congress (MDSC).

Dr. Harish Sehdev, MD, perinatologist; Director, Prenatal Diagnosis Unit at Pennsylvania Hospital; Former Director of Labor and Delivery at Pennsylvania Hospital.

Dr. Kan Hor, MD cardiologist at Cincinnati Children’s Hospital, a leading
facility in pediatric cardiology.

To comment on the list please click here:
http://downsyndromepregnancy.org/down-syndrome-pregnancy-research-needed/

Checklist for Local Organizations

March 11, 2011 in

Throughout our book Diagnosis to Delivery: A Pregnant Mother’s Guide to Down Syndrome, we encourage expectant parents to contact their local Down syndrome group, both in general for support, and also in specific for various questions which are best answered locally.  We understand prenatal support programs may be in various stages of development, so this checklist may help some local groups. In order to be prepared for possible questions by expectant parents, local groups should have the following information, or as much of it as practical, available to expectant parents.

Start with a link to http://downsyndromepregnancy.org/ on your website.  Explain that there is a free book available for download (do not put the book itself on your website as this is copyrighted information).

Other areas we suggest be addressed are:

YOUR LOCAL SUPPORT

Prenatal support information
    Contact person for prenatal support
    A menu of available programs, and services

Local on-line discussion group or e-mail list – information to sign up

Local sibling programs

Parent to Parent, connections with parents with similarities (internal list)
    Cultural background
    Religious background
    Other language
    Specific geographic locale
    Twins
    Single parents
    Same ancillary medical conditions
         heart defects, particular kinds
         intestinal atresias
         fluid issues (in general or things such as hydrops)

LOCAL HEALTH CARE PROVIDERS

Recommendations of obstetricians in area
    Not on your website, but available
    This will help expectant parents having issues with the care they are receiving

Recommendations of therapists in area (centered on perinatal depression)
    Not on your website, but available
    This will help expectant parents needing professional assistance with the emotions post-diagnosis, particularly those at more risk due to history or circumstance.

Local lactation consultants or breastfeeding support groups experienced with Down syndrome
    Websites
    Name of contact

Local hospitals for delivery
    Names, addresses, websites
    Basic delivery information (if NICU, level of NICU)
    Name of personal contact if available

Local Children’s Hospitals information
    Websites
    Name of contact

Local Trisomy 21 or Down Syndrome clinic information
    Websites
    Name of contact

LOCAL SERVICES/AGENCIES

State services: insurance programs (CHIP) information
    Other related benefits & disability service programs
    Websites
    Name of contact

State services: rules for Medicare, SSI
    Websites
    Name of contact

State services: early intervention structure
    Particularly parental contributions, general overview
    Websites
    Name of contact

Local services: early intervention structure
    Local providers list (by agency matched to geographic locale)
    Parent-to-Parent specific geographic area/ EI

New Prenatal Testing: Are You Ready?

February 22, 2011 in

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 rsteele@zoomtown.com
  • 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.

About the Book

July 24, 2010 in

Diagnosis to Delivery: A Pregnant Mother’s Guide to Down Syndrome by Nancy Iannone and Stephanie Meredith

This publication goes beyond just being a very useful resource for couples; it also has a very human side that comes through openly and compassionately. This book points out many important thoughts that I express to my patients. First and foremost, what others think about a particular situation is not as important as what each individual couple believes and needs to worry about. There are resources available to reach out to for support, education, and information … The more information that a couple has, the better prepared they are to make it comfortable and enjoyable for their family. — Dr. Harish Sehdev

Reviewed by the following nationally recognized team of professionals:

Dr. Brian Skotko, MD, MPP, Clinical Genetics Fellow at the Children’s Hospital Boston and author of multiple books and articles about Down syndrome; Advisory Panel National Down Syndrome Congress (NDSC); National Down Syndrome Society (NDSS) Secretary; Chair of Massachusetts Down Syndrome Congress (MDSC).

Dr. Harish Sehdev, MD, perinatologist; Director, Prenatal Diagnosis Unit at Pennsylvania Hospital; Former Director of Labor and Delivery at Pennsylvania Hospital.

Dr. Joann Richichi, DO, OB/Gyn and author of 9 Months to Go: What You Need to Know.

Dr. Kan Hor, MD, cardiologist at Cincinnati Children’s Hospital, a leading facility in pediatric cardiology.

Campbell Brasington, MS, CGC, Genetic Counselor and Clinical Coordinator for the Down syndrome clinic at Carolinas Medical Center; Advisory Panel, NDSC.

Dr. Sarah Riddle, MD, IBCLC, FAAP and Dr. Sheela Geraghty, MD. MS, IBCLC, FAAP, physicians at Cincinnati Children’s Hospital who specialize in breastfeeding.

Amy Allison, Executive Director of the Down Syndrome Guild of Greater Kansas City and Down Syndrome Affiliates in Action Board Member.

Mark Leach, Esq., Down Syndrome Affiliates in Action Informed Decision-Making Task Force Leader; Down Syndrome Affiliates in Action Board Member; Down Syndrome of Louisville Board Member. Father of Juliet, a little girl with Down syndrome.

Melissa “Missy” Kline Skavlem, Down Syndrome Association of Greater Cincinnati Board Member; Board Moderator, Baby Center’s Down syndrome pregnancy on-line support board. Mother of Violette Skavlem, a little girl with Down syndrome.

Down syndrome Blogs