Posts Tagged ‘Diagnosis to Delivery’

Organization & Preparedness 101

November 21, 2014 in Birth Plans, Future, Health Issues, Medical Provider, Post-Diagnosis Health

Pregnancy post-diagnosis is often a blur of medical appointments, especially late in pregnancy.  Expectant parents receiving co-care from several health care professionals may see multiple doctors in an obstetrics practice and multiple doctors in a maternal-fetal medicine practice.  There may be a lists of tests, lists of questions, scraps of paper with phone numbers.  We highly recommend making an organizational plan to keep track of all of your medical information during pregnancy.  Parents should purchase a a binder/ notebook to keep track of dates, medications, doctors, tests, results, questions, and answers. Include your birth plan as well.  Ask your doctors for copies of your medical records, especially the karyotype, which shows the baby’s chromosome count.

You may also want to start a binder for the baby, starting with the karyotype and a summary of the pregnancy.  Keep track of all medical personnel, tests, etc. connected with the baby in this binder.  Some items which may be helpful to start are the following:

The Down Syndrome Growth Charts

The Down Syndrome Health Checklist
(The health guidelines have been recently updated – download HERE)

The Down Syndrome Developmental Charts

Blogger Ria provides amazing advice on creating an organizational system, with extremely helpful links and step-by-step instructions.

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.

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://www.ndsccenter.org/en-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”

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.)

Why I love DSP- from a “graduate”

December 3, 2011 in Support

Every day at Down Syndrome Pregnancy, we provide expectant parents layers of support through our discussion board, private contact, and blog posts.

DSP “graduate” Megan Landmeier says, “When I got the news that my baby girl had Down syndrome, my world turned upside down. Downsyndromepregnancy.org launched within weeks of getting Ellie’s diagnosis. I was able to share the website and book with family members and close friends; connect with other women; learn more about Down syndrome; and find hope from experienced parents who talked me through both of my daughter’s major surgeries. I cannot fathom how difficult my pregnancy would have been without the voices of other parents providing hope.

I now have a happy, healthy eight month old daughter. When she arrived, we were able to celebrate because we were prepared for her extra chromosome with community, information, and resources.”

Every day, we help women like Megan navigate the unfamiliar territory of pregnancy post-diagnosis. To help us with our work, join our end-of-year fundraising drive at our First Giving page.

Welcome expectant parents!

November 12, 2010 in Blog, Book, Diagnosis, Emotions

Congratulations on your pregnancy, and welcome to our community. If you have just received a confirmed or suspected diagnosis, you may be feeling very afraid, alone, and overwhelmed. We offer information that can help.

1. A free downloadable Down syndrome pregnancy book.  (Suggested $10 donation.) Buy the printed version HERE (Woodbine House).

2. A blog on our home page.  The current post is always on the front page, and you can also search by categories.

3. Open dialogue on Baby Center’s Down syndrome pregnancy board.  This is a public board not owned by us, but our own Nancy, Missy, and Amy are there on a daily basis to answer questions, provide comfort, and facilitate peer support.

4.  Valuable supplemental information in our Resources section.

We’re here to help you on this journey, prepare you for the immediate future, and give you hope.  Feel free to contact Stephanie privately if you wish at stephanie.meredith@uky.edu.

DownSyndromePregancy.org is administered as part of the National Center for Prenatal and Postnatal Down Syndrome Resources at the University of Kentucky’s Human Development Institute (HDI).

People are talking

October 22, 2010 in Blog, Book

We love the chatter we’ve been seeing about our book and website on facebook, e-mail, discussion boards, and blogs.  The more you talk about us, the more likely expectant parents in need of information will find us.  So please, keep talking!  If you would like to see what some people are saying, take a look:

Jennifer Margulis over at the Mothering blog talks about our Stephanie Meredith, both as coauthor of Diagnosis to Delivery and executive director of Lettercase.  She also talks about the new prenatal testing on the horizon.

Special Needs Children Editor Pam Wilson of Bellaonline discusses the new resources for parents, including our website and book (which she calls “outstanding!”) and Stephanie’s booklets available through Lettercase.

One Speech and Language Pathologist at the Thomas Center for Down Syndrome in Cincinnatti, blogs that our book is “absolutely outstanding.”  She goes on to list a variety of people who should read our book, including medical professionals and students.

Nancy McCrea Iannone’s local newspaper published an informational piece on the book and website.

Gillian Marchenko is spreading the word on the Chicago Special Needs Parents Examiner.

And speaking of parents, they are sharing through their blogs.  Here is a sampling:

Our photographer Kelle Hampton (“The individuals who created it passionately put their hearts and souls into something that is beautiful, informative and, I imagine, an incredible guide in navigating the intimidating waters of the first steps of acceptance.”)

Our photographer Conny Wenk (“CONGRATULATIONS, Nancy and Stephanie for putting so much work and effort into this invaluable book!!!)

Bill and Ria (“wonderful, incredible, comprehensive . . ., practical, compassionate, . . . and easy-to-follow”)

Barbara Curtis at Mommy Life

Becca at the Bates Motel (“amazing, long over-due”)

Jess at Raising Joey

Erin at Ski’ing Through Life (with absolutely gorgeous photo of Grady and his dad) (“I wish I had this when I was pregnant.”)

Jennie at A Little Something Extra for Us (“FABULOUS”)

Qadoshyah at Got Down Syndrome (with some extra cute Kelle Hampton and Conny Wenk photos)

Our friends on the other side of the world are also talking.  Keeping Up with Down Syndrome is a blog for the Down syndrome group in New South Wales, Australia.  (Even if many parts are not relevant outside of the U.S., it is still “good, well researched information.”)

Keep the conversation flowing!  And bring some of it to our blog – our expectant parents could benefit from a variety of perspectives.

Some kind words from our favorite writers

October 8, 2010 in Book

We have received so many e-mails, and we truly appreciate every message. We would like to share those that come from mothers who brought personal stories about people with Down syndrome to new parents everywhere. 

“I wish this resource had been available when my son, Thomas, arrived five years ago. It provides exactly what I wished for but could not find: informed, practical, and compassionate guidance in vital matters regarding the well-being of a family newly touched by Down syndrome. With warmth and knowledge born of experience, the authors shed light into the shadowy time when the difficulties of parenting a child with special needs loom large, and the rewards have not yet been discovered. ”

– Kathryn Lynard Soper, author of:

Gifts, Mothers Reflect on How Children with Down Syndrome Enrich Their Lives

Gifts 2, How People with Down Syndrome Enrich the World

The Year My Son and I Were Born

“What a treat it was to read Diagnosis to Delivery: A Pregnant Mother’s Guide to Down Syndrome.  I found myself nodding my head in agreement, and laughing, and smiling, and yes, there were even some tears, because it’s that kind of book.  A book that inspires all sorts of emotions, and most importantly, gives help and hope in full measure.  I love so many things about it:  I love the clear, straightforward language; I love the book’s scope (a perfect blend of just enough insight, without being overwhelming); I love the self-talk we all have (what we say out loud, versus what we are thinking in our heads!); I love the resources you’ve included, and I especially love the photos, because sometimes, a picture is worth even more than a thousand words.

-Jennifer Graf Groneberg, author of Road Map to Holland:  How I Found My Way Through My Son’s First Two Years with Down Syndrome

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