Posts Tagged ‘downsyndromepregnancy.org’

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.

Diagnosis Day: Parents, what would you say to your past self?

October 23, 2014 in Emotions, Future

Taylor loves ballet!

For so many of us, the day we received a diagnosis for our child with Down syndrome is a day of shock and sorrow. We moved forward from that time, and have grown along with our children. In the book The Time Traveler’s Wife, the main character travels back in time, and at one point tells his doctor that the doctor’s unborn child has Down syndrome. “He’s a wonderful boy,” is the attempt at reassurance from the time traveling friend. Having spoken to so many expectant parents, I can say that this bland generalization is not enough for those facing that raw time of fear of the great unknown. Parents often thirst for so much more.

We talk about “what to expect” so much on our blog and discussion board on Baby Center. NICU stay, prenatal monitoring, medical care, government services – the list goes on. Practical. Informative. Useful. But of course information is simply not enough. We need to mix it up with some personal experience, which we do through our blog comments and discussion board posts. Experienced parents, if you could travel back in time and meet yourself on that day, what would you say? What would your past self need to hear about your child, your life, your family?

Mom and blogger Patti provides a particularly beautiful glimpse into the life of a family which has a child with Down syndrome here.

Darci Howard of BYU tv’s Fresh Take also interviews blogger and author Kelle Hampton, who is also one of our pregnancy book photographers. Expectant parents grappling with intense emotions may identify with Kelle’s account of those first few hours after she learned baby Nella had Down syndrome. But keep watching, and you will hear of the transformation of those feelings, and catch a glimpse of cute baby Nella at the end of the interview.

Interview: http://byutv.org/watch/8303febf-8c13-4a43-a645-99439d54f350 (starting at 17 minutes)

Kelle’s blog: http://www.kellehampton.com/

Kelle’s story of Nella’s birth: http://www.kellehampton.com/2010/01/nella-cordelia-birth-story.html

You can also read stories from other moms and dads around the world who received a prenatal or postnatal diagnosis at Unexpected Stories of a Down Syndrome Diagnosis.

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.

Dealing with People and Comments

August 25, 2014 in Comments, Emotions, Friends and Family

Part of putting yourself “out there” with the news is that you then have to deal with comments from the people you know. Most people mean well, but sometimes things sound “off” to an expectant parent. What kinds of statements make (made) you uncomfortable? Did you respond? Do you wish you had said something different? What were some of the best comments, and how did they help your state of mind? Aside from the comments, are you having any issues dealing with people around you – are you having trouble connecting?

Experienced parents, do you have any useful strategies for our expectant moms?

Playing the “waiting game”

July 24, 2014 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 more accurate than previous screening tests (though false positives and negatives do occur). 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?

All the single ladies

June 25, 2014 in Diagnosis, Emotions, Future, Support


If you were a single mom during your pregnancy or after your baby with Down syndrome was born, we would love to hear from you here on this blog post. Some of our moms are single moms when they find out their babies have Down syndrome. A few part ways with their partners after a diagnosis. While this may not happen often, those moms would really benefit from hearing from experienced single moms. Will you share your story here?

Words that hurt: Asking family and friends to use kinder words

June 2, 2014 in Comments, Friends and Family

Many expectant parents become very sensitive to words they hear, including slang such as the use of the R-word. Many parents are hurt and unsure of how to handle this. If they confront their loved ones, things can get very awkward. If they say nothing, they may feel disappointed in themselves for not sticking up for their child. This is new social territory for you, and it can be very confusing. DownSyndromePregnancy.org has a sample e-mail for you to copy and edit to suit your own circumstances. For our parents who have dealt with this situation, will you share your experiences?

15 Reasons to contact your local group

April 16, 2014 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?

Slice of Life

March 21, 2014 in Future

Many expectant parents would like to see a glimpse of the future with their child with Down syndrome, beyond the lists of medical possibilities. While each family and individual with Down syndrome is unique, one thing most of us can agree on is that the reality of living with someone with Down syndrome is much different than we imagined on that diagnosis day. And that reality is often remarkably ordinary—including soccer practice, sibling squabbles, birthday parties, and snuggles and popcorn during a movie.

While it’s true that some time usually needs to be devoted to speech or physical therapy visits, those visits become part of a daily routine. Speech therapists who come to our homes often become dear friends, and physical therapy appointments may become that time of day where we run to the grocery store. And while it’s also true that our children may have medical issues, some more or less than others, the time spent dealing with those medical conditions is usually a very small slice of a much bigger pie.

Once our children with Down syndrome start developing their own identities, it can sometimes be shocking how they shed those identities we originally envision as new and expectant parents. When my own son was born, I remember writing down everything that scared me: people making fun of him, having other children, having him live with us as an adult, and losing the vision of a child going to college and having a career.

Now at 14, he’s very popular — boys from school show up at my house to play basketball and give him “bro hugs” at the bike trail when they run into him. He has two younger sisters who are 11 and 7, and our biggest challenge there is making sure the girls don’t go in his room without asking and making sure he doesn’t call his younger sisters “embarrassing” and “annoying.” And even though I’m fairly certain he’ll need some help as an adult, he already keeps bags packed in his closet hoping that he’ll get to move to the beach with his best friend someday. There are also now 220 college programs for students with developmental disabilities, and Andy is determined to go and has already shown real promise as a photographer (who has already had an exhibit in Russia and won the PTA Reflections Photography contest for the past 4 years). We also spend our summers as a family on the mountain bike trails.

Andy Bites Edit from southernj on Vimeo.

If you had told me all of this when I was a scared 23-year-old first receiving the diagnosis, I never could have pictured that this was what the future held.

Experienced parents, will you share a peek into your lives?  Start with your child’s name and age, and give our expectant parents a snapshot of your present to help them envision their future.  Expectant parents are welcome to ask questions as well.

Read about “A Day in the Life” of other moms here:

The emotional impact of diagnosis

March 19, 2014 in Diagnosis, Emotions, Post-Diagnosis Health


Many moms report that the most difficult part of being the parent of a child with Down syndrome is the diagnosis and the immediate aftermath. Moms report thoughts and emotions they never thought they would have. Most are not prepared for the onslaught of emotions, and the intensity shocks them. Have you just received a diagnosis? What are you feeling? If some time has passed, how did your feelings change? If your baby has been born, how do you feel now? Do you believe receiving a prenatal diagnosis has helped your state of mind now that you have your baby? Do you regret your decision to find out in advance?

CoorDown in Italy also produced this beautiful video for pregnant moms featuring individuals with Down syndrome. Their message to you expectant moms who may be struggling to understand a diagnosis:

Watch this video featuring people with Down syndrome and their message to future moms by CoorDown in Italy.

In addition, you can also read letters from individuals with Down syndrome to to new members of the Down syndrome community at the Congratulations Project. These letters are designed to inspire, encourage, welcome and, most importantly, congratulate new parents and siblings of a child with Down syndrome.

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