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).

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?

Learn to teach your baby: Down Syndrome Education International (DSE)

May 19, 2014 in Cognition

Beginner’s road map to DSE

The international charity Down Syndrome Education International (DSE) has taken the enormous elephant named “THE FUTURE” and has tried to turn in into bite-sized pieces for you. Take some time to tour this extensive resource. You will find information about adulthood, adolescence, and childhood. After you get a feel for the generalities, you can focus in on the time period of greatest importance, age 0 to 5 years. We believe DSE will empower you, showing you what YOU can do to help your child, increasing confidence about both the distant and very near future.

Click HERE for basic overview of DSE.

The beginner may find it useful to review the following materials from DSE. Each section has subsections in a box over to the right of each page so make sure you access those sublinks for further reading in each category.

Overviews

Living with Down syndrome – Overview

Social Development – Overview

Memory Skills – Overview

Family Issues – Overview

Education Issues – Several

Motor Skills -Overview

Birth to Age 5

Overview- Birth to age 5

Early Intervention and Teaching – Birth to age 5

Speech and Language – Birth to age 5

Reading and Writing – Birth to age 5

Number Skill Development – Birth to age 5

We believe DSE to be an invaluable resource for parents and educators alike. If you find DSE as useful as we do, share this resource with those involved in your child’s care, and consider a donation to this charity.

Another wonderful educational resource is Teaching Children with Down Syndrome that specifically covers practical tips for educators.

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.

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?

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