Posts Tagged ‘downsyndromepregnancy.org’

Playing the “waiting game”

April 19, 2013 in Diagnosis, Emotions

Did you decline invasive testing, but had a higher chance that your baby has Down syndrome? Many moms keep a “foot in each world,” wondering if their child has Down syndrome, but unwilling to take the risk of diagnostic testing. Many wish to prepare for the possibility so that they can hit the ground running if the baby has Down syndrome. Others ask their doctors to treat the pregnancy as if the baby has Down syndrome. Are you a waiting mom? What challenges has the not knowing caused you? What concerns do you have as you wait? Experienced moms who waited for answers, do you have any advice?

New non-invasive prenatal screening tests, such as the MaterniT21™, Verifi®, Harmony™, and Panorama™ tests, have also changed the “waiting game” for many expectant moms who can get a result that is now about 99% accurate from a blood test. We are finding many who are using those results as confirmation for their pregnancy planning purposes without going on for an amnio or CVS. The amnio and CVS are still considered the most accurate (diagnostic) but also have a very small risk of miscarriage. In fact, one recent study showed that the percentage of women getting an amnio or CVS has dropped since the new tests have been introduced. What are your thoughts on how the new blood tests have (or would have) impacted the “waiting game” in your pregnancy?

Preparing for World Down Syndrome Day 3/21/2013

March 11, 2013 in Events, Resources

On March 21 (3/21), the Down syndrome community will be celebrating World Down Syndrome Day. This date is significant because it represents three copies of the 21st chromosome, and you can find out more at World Down Syndrome Day (international website). Some families take this opportunity to share information about Down syndrome with their local communities, schools, churches, doctors, or friends and family. Ideas include offering presentations, sharing materials about Down syndrome, posting links on social media, or enjoying reading a new blog — whatever is most comfortable.

School presentations: Down Syndrome Pregnancy offers a range of presentations for schools that can be helpful in preparing older siblings and their friends for the birth of a baby with Down syndrome.

Medical Presentation: Down Syndrome Pregnancy also offers a short 15-30 minute presentation for volunteers to share with medical providers on the best practices for delivering a Down syndrome diagnosis.

Prenatal Down Syndrome Resources: While all of our materials are available for free, some expectant parents like to make sure that their medical providers have printed resources on hand in case another family in the office receives a diagnosis of Down syndrome. You can order print copies of “Diagnosis to Delivery: A Pregnant Mother’s Guide to Down Syndrome” and “Your Loved One is Having a Baby with Down Syndrome” from Woodbine House, and you can order “Understanding a Down Syndrome Diagnosis” and “Delivering a Down Syndrome Diagnosis” from Lettercase.

Blogs:

You can also see a range of blogs that have a positive connection to Down syndrome at Down Syndrome Blogs by the T21 Writer’s Alliance. The blogs are organized by category so that you can select which blogs would be most interesting to you.

Video and Social Media:

In the past few months, the Down Syndrome Guild of Greater Kansas City has released a wonderful short film featuring people with Down syndrome and their friends discussing Down syndrome, friendship, and proper language. This is another great tool to share with friends and classrooms to introduce Down syndrome:

The International Down Syndrome Coalition also shared a World Down Syndrome Day video this past week that features images of people with Down syndrome and features the song “Who I Am” written and sung by Sarah Conant.

Materiales en español

February 1, 2013 in Resources, Spanish, Support

Para nuestros padres expectantes que hablan español y para sus parientes, hay una variedad de materiales y recursos en español.

Los folletos de la compañía Lettercase tienen texto en inglés y español:
http://lettercase.org/

Recientemente esta página de la red fue recomendada por un líder de nuestro grupo:
http://www.down21.org/web_n/index.php?option=com_content&view=section&id=8&Itemid=37

Otro recurso es Brighter Tomorrows – materiales están disponible en inglés y español:
http://www.brightertomorrows.org/

También, la NDSS (la Sociedad Internacional del Síndrome de Down) tiene información en español:
http://esp.ndss.org/index.php

La NDSC (Congreso Nacional del Síndrome Down) también tiene información en español:
http://www.ndsccenter.org/espanol/

Adicionalmente, hay muchos grupos del Síndrome de Down en muchos de los países de habla español. Familias quizás puedan hallar útil buscar en la página de la red de Gifts para encontrar grupos en el país de origen (los países están en orden alfabética):
http://giftsds.segullah.org/down-syndrome-links/international-links/

“Babies with Down Syndrome” (Bebes con Síndrome Down) está disponible en español:
http://www.woodbinehouse.com/main.asp_Q_product_id_E_978-1-890627-99-7_A_.asp

Canal Down21.org

Revista Síndrome de Down

Libro de lectura y escritura

“Síndrome de Down: Vida adulta”

Materials in Spanish

February 1, 2013 in Resources, Spanish, Support


For our Spanish-speaking expectant parents, and for relatives who speak Spanish, there are a variety of Spanish language materials and resources:

The Lettercase booklets have both English and Spanish text:
http://lettercase.org/

Recently this website was recommended by a group leader: http://www.down21.org/web_n/index.php?option=com_content&view=section&id=8&Itemid=37

Another resource is Brighter Tomorrows – materials are available in both English and Spanish:
http://www.brightertomorrows.org/

Also, the NDSS has information in Spanish:
http://esp.ndss.org/index.php

The NDSC has information in Spanish as well:
http://www.ndsccenter.org/espanol/

Additionally, there are a lot of Down syndrome groups in many Spanish speaking countries. Families may find it useful to take a look at the Gifts website for websites of groups in their countries of origin (countries listed alphabetically):
http://giftsds.segullah.org/down-syndrome-links/international-links/

“Babies with Down Syndrome” is available in Spanish:
http://www.woodbinehouse.com/main.asp_Q_product_id_E_978-1-890627-99-7_A_.asp

Canal Down21.org

Revista Síndrome de Down

Libro de lectura y escritura

“Síndrome de Down: Vida adulta”

Twins

January 9, 2013 in Birth Plans, Future, Health Issues, Post-Diagnosis Health, Resources, Siblings

We sometimes have expectant parents awaiting the birth of twins, and one or both babies have Down syndrome.  If you have twins, will you help our expectant parents?  How was your birth plan different?  Did the logistics of a twin birth cause extra complications? Are there any differences in parenting that you see? In what ways is it more difficult?  In what ways is it beneficial?  If you have a blog or website that pertains to twins and Down syndrome, please share.

We will start off suggested resources by mentioning Jen Graf Groneberg’s Roadmap to Holland.  Jen gave birth to twin boys, one with Down syndrome, and wrote of her early experiences.

Another resource is a blog by Eric Waksmunski, dad to twin boys with Down syndrome.

Another guest post by Vicki Vila on Amy Julia Becker’s “Thin Places” blog gives a unique and insightful perspective about fraternal twins where one has Down syndrome and the other does not. Vicki Vila’s blog can be found at www.modernmessy.wordpress.com.

Let’s hear some more resources, and any personal experience.

Vicki Vila

15 Reasons to contact your local group

December 7, 2012 in Support

Some expectant moms wait to reach out to local groups for a variety of reasons.  Others reach out right away.  Are you thinking about reaching out?  Consider these benefits to reaching out locally while you are pregnant:

1.  You can find out if your group has a prenatal outreach, new parent support, or first call program.

2.  You may find a mentor who can help you one on one.

3.  You may be able to receive free books or other information.

4.  You will have access to the lending library.

5.  You may be able to have a discussion with other local parents with a prenatal diagnosis, about feelings, delivery plans, and experiences after delivery at your hospital.

6.  You may be able to get your extended family members involved in fundraising social events (like Buddy Walks, or dinners) which will give them a feeling of helping while you take baby steps into the community.

7.  You can learn about local medical services and providers.

8.  You can learn about local Early Intervention service providers, including family cost share and which therapists are the best.

9.  You may meet someone with a baby – someone whose child may be best friends with your child.  This may also help you see the immediate future.

10.  At group social events your typical children can play with kids with Down syndrome.

11.  Learn about programs and opportunities in your area.

12.  Find a local family that has faced the medical issue with which your baby has been prenatally diagnosed.

13.  Become more confident in your ability to successfully parent your child with Down syndrome.

14.  Make lifelong friends who you will know and trust in 18 years to come up with innovative housing and social activities for your child.

15.  Have fun! We have lots of fun at social events – it may take your mind off of this pregnancy stress and help you envision a happy future.

Adapted (“prenatalized”) from Missy’s blog post.

Some parents are uncomfortable about attending local group functions when their child is not yet born. Others embrace the chance to meet other parents. Groups vary in the supports they have available for prenatally diagnosed parents. Have you reached out to your local group? What was your experience? Have you attended functions, or do you prefer one-on-one support? If your child has a specific health issue, have you been able to connect with parents who experienced the same issues?

Preparing for a possible NICU stay

August 27, 2012 in Birth Plans, Health Issues

Expectant parents preparing for the birth of a baby with Down syndrome will read information in our book and other on-line resources discussing the possibility of a NICU stay.  Mom Adina over at Baby Center conducted an informal poll of moms which found the following:

32.4 percent of babies went home with mom

24.3 percent spent less than 2 weeks in NICU

19.8 percent spent 2 to 4 weeks in NICU

9 percent spent 4 to 6 weeks in NICU

14.4 percent spent over 6 weeks in NICU

Adina’s poll shows over half of the babies with Down syndrome had no NICU stay or only a short NICU stay.  But a large percentage do have a stay over 2 weeks.   So while many babies will not have a NICU stay, practically speaking it is a very good idea to prepare for the possibility.

Experienced moms, did your baby have a NICU stay?  If so, what advice do you have for expectant moms who wish to prepare for that possibility?

(Original post January 7, 2011)

Breastfeeding

May 24, 2012 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.

Happy Mother’s Day 2012

May 11, 2012 in Friends and Family


“A Family’s Love on Mother’s Day”
This weekend we will celebrate Mother’s Day. For our expectant mothers, this can sometimes be a bittersweet time. They have so many worries, and have not yet experienced the rewards of parenting a child with Down syndrome. They often hold on tight to our words of hope, and the vision of a future as happy as most of ours. They may have moments of sheer happiness in their pregnancy, and some fully reclaim that joy of expecting. One of our moms from the Baby Center DSP discussion board, Lindsay, sent us this picture of her family taken by her sister-in-law which captures that excitement, the anticipation of a family made complete by the addition of a little one with Down syndrome.

Bloggers, will you share your Mother’s Day posts with our expectant moms?

(Also, this photo is in a “Mommy and Me” contest – vote for it if you wish. Go to wncy.com/, then go to Mommy And Me Photo Contest under quick links. Register and then go to your email to confirm. This picture is on page 3, picture 28.)

Your prenatal care

May 4, 2012 in Medical Provider, Post-Diagnosis Health

Many parents choose to receive a diagnosis in order to receive more prenatal care, yet the prenatal care for a Down syndrome pregnancy varies throughout the country. What has been your experience? Did you feel you were receiving adequate care? Did you wish your doctor would be more aggressive? Were you overwhelmed with the tests and wish they would step back?

This post was originally posted on October 7, 2010.  We hope to see even more input to help expectant parents.

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