Emotions archives

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.

50 things to do instead of worry

March 10, 2014 in Emotions

by Missy Skavlem and Stephanie Meredith

Everyday, I talk to a number of moms who are passing time until the births of their children with Down syndrome, or waiting to find out if their child with have Down syndrome. I remember how long that time can seem. I also remember that at the end of a long day, I’d find myself on the computer looking for information. Sometimes, since I didn’t know where to look I ended up at highly medical sites that scared me. I decided to put together a list of things to do instead of worry about having a child with Down syndrome while you are waiting. I hope you enjoy it, and I hope that lots of people will contribute other ideas of what worked for them.

Don’t feel like you have to go through the whole list in one sitting, and if something on here doesn’t make you happy, move on to something else. These are all the things I wish I had been thinking, doing and looking at instead of worrying about my child when I was waiting out my 1 in 16 odds that she would have Down syndrome.

1. Look for pictures of children with Down syndrome who look like people in your family. When you start looking at a lot of people with Down syndrome and their families they start looking very different from one another – your baby will too! The Shifting Perspectives exhibit is particularly cool.

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

3. Visit Happy News.

4. Find blogs from other parents who resonate with you at the Down Syndrome Blogs website.

5. Read the research behind signing to your child with Down syndrome.

6. Bookmark the Medcalc Growth Chart - you can use it no matter how many chromosomes the baby has.

7. Learn the signs for: Milk, BabyDrinkEatMore, and All Done.

8. Check out DesignMom.com for ways to make life with your baby simply beautiful and fashionable.

9. Make some freezable meals and create a SignUpGenius account to coordinate volunteers for childcare/meals after baby is born.

10. Check out Pinterest for fun ideas on knitting a baby blanket, cooking healthy dinners, educational baby toys, starting a baby book, taking newborn photos, and Down syndrome. And, of course, take a look at the Down Syndrome Pregnancy Pinterest page and make recommendations for us.

11. Take pregnancy photos and prepare for photos of your new baby. Check out The Blessing of Verity: Down syndrome photo tutorial and take a newborn photography tutorial.

12. Watch these videos on the experiences of a couple of dads: Tim Harris’s Dad and Heath White.

13. Check out all the baby signs on Signing Savvy. For our international friends, Australian mums can take a look at Auslan baby signs and British mums can check out British Sign Language baby signs. If you’re really ambitious, take a basic sign language class.

14. Visit bored.com.

15. Think of names for the baby.

16. Research your local Down syndrome group.

17. Read about the national Down syndrome organizations: The National Down Syndrome Society and the National Down Syndrome Congress.

18. Read Missy’s blog post about things adults with Down syndrome can do.

19. Read Missy’s blog post about businesses run by people with Down syndrome.

20. Read “Praying for Patience“ and “Strong Enough to Be Your Mom” by Rachel Coleman, founder of Signing Time, and check out the Signing Time app to learn lots of signs for baby.

21. For a faith-based perspective on Down syndrome, read Amy Julia Becker’s “A Good and Perfect Gift: Faith, Expectations and a Little Girl Named Penny” to read about Amy Julia’s evolution from the sorrow and grief after the initial diagnosis to her appreciation and profound love for her daughter.

22. Go shopping and purchase something for the baby that you think Angelina Jolie or Kate Middleton would buy for their children. Your child deserves something nice too!

23. Write a list of the things you are most scared about, and post it over on the Baby Center Down syndrome pregnancy board and let them help you sort out which ones are legitimate and which you don’t need to worry about so much.

24. Read about the Pujols Foundation.

25. Write down dreams you had for yourself and your family before you found out and picture doing them again.

26. Think of one thing you love to do, and Google that hobby plus the word “Down syndrome.” I bet you can find someone with Down syndrome doing it! Tae Kwon Do, mountain biking, swimming, art, music, photography, acting … you name it.

27. Visit The Desk and get a glimpse at the Medicaid services that may be available in your state. If you are worried about finances, this is a good place to start learning.

28. Learn about the Early Intervention Program in your state.

29. Visit this Special Needs Dictionary to know the different terms you might hear with a child with Down syndrome

30. Visit Conny Wenk’s blog and check out all of her beautiful photographs of children with Down syndrome. The Girl with the Freckles is especially cute.

31. Read The Shape of the Eye by George Estreich. It’s good stuff.

32. Read some of the Bridget’s Light blog and Down Syndrome New Mama to get lots of great ideas for new and expectant moms and see a glimpse of life with Down syndrome.

33. Read Kelle Hampton’s blog, Nella’s birth story. Poke around other posts on her site to see how Nella is doing.

34. Watch my favorite signing video, Caterpillar Dreams.

35. Subscribe to Maureen Wallace’s SheKnows Parenting column, and read one of her most popular articles on “Divorce: Does “Down syndrome advantage” exist?”

36. Think signing isn’t cool? Watch this.

37. Learn about the wonderful Karen Gaffney.

38. Learn about current Down syndrome research on cognition from the Down Syndrome Research and Treatment Foundation (DSRTF).

39. Read the book Gifts and Gifts 2.

40. People may not know what sorts of things would be useful to you and your new baby – check out this list.

41. Are you worried about “doing it all” once the baby comes? Consider a program like E-mealzdine without whine, or Saving Dinner – a quick search on menu planning will help you come up with other ideas as well.

42. Watch an episode of The Specials. Try to see past the speech difficulties the individuals have, and watch how they are living their life. Changed my mind about “group homes” forever.

43. Read Jennifer Bekin’s story and bookmark her blog – Jenn is a speech therapist who has 3 siblings with Down syndrome.

44. Read Kathryn Soper’s “What Parents Wish They’d Known: Reflections on Parenting a Child with Down Syndrome” to read quotes from other parents.

45. Enjoy this motivational speaker talking about his life.

46. Read 10 ways a baby with Down syndrome will improve your life.

47. Read about Dr. Brian Skotko - a wonderful person, a Harvard educated doctor, a specialist in Down syndrome and the brother of a woman with Down syndrome – We’re BIG fans!

48. Learn about college opportunities for people with Down syndrome and other intellectual disabilities!

49. Go to Down Syndrome Education International for lots of great information about how to teach your baby. There are also links to really helpful apps to start reading recognition at a very young age.

50. Start checking out different apps at the blog “With a Little Moxie: Educational Apps for Kids with Special Needs” to see which ones you think are fun.

Who was I then? Who am I now?

February 24, 2014 in Emotions, Future

After giving birth to a child with Down syndrome following a prenatal diagnosis, parents often reflect about how their children with Down syndrome have influenced their lives, their perspectives, and their appreciation for what life has to offer. Expectant moms are often worried about the impact on their lives and families. When baby’s smile and coos are not here yet, often the predictions about impact tend to be negative. While some of moms do have confirmed and possible medical issues on the horizon, worries about such things as these can sometimes take over perceptions of the future.

The moms below share how their child with Down syndrome has changed them …  where they started, where they are now, and how their child has changed the way in which they view themselves, their family, life, and disability.

You can also read a diverse range of stories from sixty-three mothers of children with Down syndrome in GIFTS: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives.

Reclaiming Joy

January 21, 2014 in Emotions

Our book has a chapter addressing the emotional impact of diagnosis, and for most expectant parents this is an emotionally volatile time.  However, many expectant parents progress forward to the extent that they are excitedly anticipating the birth of their baby.  Sometimes there are parents whose difficult days were few or barely there, and others who have left those days behind.

Have you or did you reclaim the joy of pregnancy?  Are your loved ones or acquaintances puzzled by your enthusiasm?  If you were a parent whose tough days were very few, share with those of our parents who are feeling happier than they expected.  Even if your feelings are (or were) happy one day and sad the next, tell us what makes you happy, hopeful, and excited.

Pregnancy Blog Posts

May 15, 2013 in Blog, Emotions, Resources

Leticia Keighley from Australia recently shared with us the beautiful story of her pregnancy on her blog: Embracing Wade. She offers a raw and authentic account of her experience “waiting it out” after receiving a 1:69 chance of having a baby with Down syndrome.

“My pregnancy was definitely a roller coaster of emotions where I questioned my resolve, my decisions and my sanity every time I got a new test result. But right from the beginning, all the way through till now, I had reasons why I didn’t want to test for Down Syndrome. This post is not about what I think everyone should do, it’s about what I did and how it helped me get through the turmoil of prenatal diagnosis. Even though there were ups and downs during those 9 months, by the time Wade was born, I was ready and happy and waiting there with open arms to meet him whether he had DS or not and if any of my thought processes help other women in similar circumstances then its achieved its purpose.”

Below is our list of blogs from other moms who received a prenatal diagnosis and then blogged about the experience during their pregnancy. Those stories are so real and meaningful to expectant parents who can then go on to read the outcome for families. Please add to our list in the comments.

Mother’s Day 2013: Jenny’s Story

May 10, 2013 in Blog, Book, Diagnosis, Emotions

As part of our 2013 Mother’s Day campaign, we’re sharing stories to uplift and inspire moms who received a prenatal diagnosis of Down syndrome. Enjoy!

Jenny’s story:

Our story began the day of our fourth child’s 20 week anatomy scan. We had declined all early testing each pregnancy, but because of previous preterm labor issues, we had regular ultrasounds to see our little bug. This had been the easiest pregnancy of all the kids, and being seasoned parents, I didn’t reschedule our ultrasound when we discovered my husband had a conflict that day. I was anxious to find out whether we would be evening up the gender war or adding an even greater advantage to the boys’ side. I planned to go buy a gender specific outfit and surprise dad afterwards. I dropped all the kids off and happily arrived to my appointment.

I’ve had lots of ultrasounds throughout my pregnancy lifetime, but it is still incredible to me to see a life we had created growing and moving inside my body. Hearing the heartbeat is one of the sweetest sounds in the universe. My ultrasound tech was wonderful and explained all the bits and pieces, although not a lot of explanation was needed in the gender area. After having two boys, it was confirmed quickly that my daughter would have 3 brothers! After some shifting around (more than usual) the tech said she got what she needed and sent me to wait for the rest of my appointment with my doctor.

I had already begun to feel a little uneasy; something just seemed off. When the doctor walked in, I knew something was up.  He did his regular checks and then asked me to join him on the chair to review the ultrasound. My stomach dropped.

Within the next minutes, I heard that my baby did not have a nasal bone and that he recommended that I see a perinatalogist for a level 2 ultrasound. This was a marker for Down syndrome. Everything else looked fine (heart, GI, etc.) as those could also be indicators.

Next, I drove to my husband’s office to tell him the news. Oddly, as I cried during the 30 minute drive, I was most worried about the stigma around Down syndrome. How would he be treated? Would he ever fit in? What would others say and do?

My unsuspecting husband joined me in the car; I couldn’t bring myself to walk in. I told him another son was on he way and then I dropped the bomb. He comforted me and reminded me that our baby would be our baby no matter what. If I wanted more information, schedule an appointment. He was a rock of strength and his faith, unfaltering.

Feeling more at ease, I went shopping for baby boy clothes. Retail therapy was in order.

I scheduled the appointment and it would be 2 weeks later. What?!? Those were a long 2 weeks. During that time I googled as much as possible about Ds and found the good, the bad and the ugly. I reached a point where I could no longer see information. This is also the time
I began lurking on the Ds and Ds pregnancy boards on Babycenter.  It was really helpful to see photos and hear stories and questions from other moms.  Finding that site allowed me to calm down and carry on during the dreaded wait time.

Before the appointment with the perinatologist, I believe I already knew what our future held. I had already decided that I would not have any invasive testing. So, when 2 other soft markers were noted, I jumped at the chance to take the new Verifi™ blood test which would give us an answer with 99% accuracy in 8 days.  8 days.

I tried to keep extra busy during that wait and tried to stay off Google. But, by the time the genetic counselor called with results, I was convinced that we already knew our little one would be extra special. The results confirmed my instincts on a Wednesday afternoon. I cried as a I called  my husband to tell him that our newest son had three copies of the 21st chromosome, but this time it was driven by relief and content, not fear or anxiety.

That night, I spent more time with the BabyCenter groups and Downsyndromepregnancy.org. These truly became lifelines to me throughout my pregnancy. I felt like I no longer fit in with my birth board. We chose to not tell people other than family and close friends until our little one arrived, so that also limited my support. I had sound research and real-life experience at my fingertips, and it was incredibly comforting during this challenging time. The BabyCenter board was also the starting point for the Facebook group of moms I have grown to love and admire. Over 100 moms new to the journey of DS living life together online; it is a beautiful thing!  Without the BabyCenter Down syndrome boards, I cannot imagine how I would have come through all of this.

Owen Henry Jacob was born at 38 weeks, 5 days. We induced because the doctors believed the fluid around his heart was increasing. We welcomed our precious son on December 28, 2012. He was 7 pounds, 7 ounces and 19 ¼ inches long. And he was (is) perfect.

He was a strong nurser right away and was cleared by the NICU staff and doctors. Hours after he was born, he was moved to the NICU due to pulmonary hypertension. He started on oxygen and was doing great after a saline/blood exchange. That night he was cleared by the pediatric cardiologist (no fluid at all!). He ate very well, and after experimenting with oxygen levels, it was decided that we could bring him home with oxygen on day 6.

Today, Owen is 4 months old! Time really does fly. He is almost 16 pounds and has started rolling from back to front. His smiles and giggles are tough to capture, but they light up the room. We have had 2 ABR tests for his hearing, and Owen will be getting temporary hearing aids this month. Once his ear canals are large enough, tubes will be placed and we believe that will solve his hearing issues too.



His older siblings are in love and so are we. We are so blessed with our family of 6. I am still basking in the newborn glow (or maybe that’s sleep deprivation?!) and find solace with my other moms who have kids rockin’ the extra chromosome. The BabyCenter website and downsyndromepregnancy.org filled a huge void in my life during the very difficult time from diagnosis to birth. I am forever indebted to the women who began it all and continue to support so many moms (families) each day.

Read more from Jenny at her Blessings Beyond the Ordinary blog. Thanks Jenny!

Mother’s Day 2013: Jackie’s Story

May 8, 2013 in Blog, Book, Diagnosis, Emotions

This year we’re celebrating Mother’s Day by sharing stories from moms who have used Down Syndrome Pregnancy and the BabyCenter Down Syndrome Pregnancy board over the years, and we’ve also launched a 2013 Mother’s Day campaign to distribute copies of “Diagnosis to Delivery: A Pregnant Mother’s Guide to Down Syndrome” to prenatal genetic counselors nationwide.

We hope these stories will uplift and inspire you and let you know that you are not alone.

Jackie’s Story:

At 18 weeks pregnant, my husband, Greg, and I were so excited to head  to University of Michigan Hospital for our ultrasound and find out if we were having a boy or a girl!

We found out after a long ultrasound that we were expecting a sweet baby girl. What we didn’t expect to find out was that we had a high probability of having a baby with Down syndrome. We met with a genetic counselor and ended up having an amnio the very same day to confirm the diagnosis. We saw enough markers on the ultrasound to expect the positive amnio result we received 48 hours later.
I did a lot of online research and was eventually directed to the Down Syndrome Pregnancy board from BabyCenter.com. What a lifesaver for me! I had finally found a group of women who actually understood (and didn’t judge!) all of the feelings I had going through my mind.

Through that board I found tons of pregnancy resources, Down syndrome resources, and support from a lot of amazing women. It’s so nice to have a great group of supportive people to walk this journey with. I went from feeling totally alone in my pregnancy (even with a very supportive husband by my side) to feeling encouraged, supported and uplifted.

Today our beautiful daughter is 15 months old with the sunniest, sassiest, and sweetest disposition, and she totally rocks her extra chromosome. I shudder to imagine how my mental state would’ve fared without the resources from BabyCenter and DownSyndromePregnancy.org. Luckily, now we are able to see how we needed Lauren to complete our family … however she happened to arrive in our lives and however many chromosomes she arrived with.

We are blessed!

Sincerely,

Jackie

We’d love to hear more stories from other moms, so please share in the comments or send your story/photos to stephanie.meredith@uky.edu.

What Parents Wish They’d Known

May 1, 2013 in Emotions, Future, Resources

Kathy Soper collected thoughts from experienced parents, and through the generosity of publisher Woodbine House, this collection of parental advice is available free on the Woodbine House website.

We do link to this booklet in our book, but an extra tidbit is that my thoughts about my daughter Gabby are recorded there. What did I wish I would have known about Gabby? Check out my quote from the booklet:

I wish I’d known that I would say and feel so often, “You’re so smart!” or “You are the cutest kid in the whole world!” I wish I’d known I would use words like “sparkling,” “vivacious,” and “infectious laughter” when describing my child. I underestimated her.

While you are over at Woodbine House, check out the amazing list of Down syndrome resources that they have available.

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 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?

Prenatal Testing: Insight from Moms

February 5, 2013 in Diagnosis, Emotions

Amy Julia Becker’s recently released book, “What Every Woman Needs to Know about Prenatal Testing,” explores new advances in prenatal testing technology, the ethical implications of testing, different reasons for testing, and how prenatal testing impacts the author from a faith-based perspective. Amy Julia is also the mother of a daughter with Down syndrome and the author of “A Good and Perfect Gift: Faith, Expectations and a Little Girl Named Penny.”

Amy Julia’s target audience for “What Every Woman Needs to Know about Prenatal Testing” is pregnant women who have not yet undergone prenatal testing or those who plan to start a family. She explains the range of prenatal tests for Down syndrome (and other conditions) in language that is easy to understand and then explores the reasons why different women may or may not choose to take tests. The approach is informative and balanced — exploring the different practical and ethical issues at hand.

Author Amy Julia Beckers says:

“All pregnant women will be offered the option of prenatal testing. As a result, all pregnant women face a series of personal and ethical questions about those tests. This book is designed to help women navigate the testing process by considering three questions–what is prenatal testing? what information does it offer? and what information do I want, and why? Women who have already started down the road of prenatal testing can benefit from this book in that it offers resources to think through the role of disabilities within our society and the possibilities for considering a good life for children with disabilities. There is plenty of medical information out there about prenatal testing, but this book is designed as one mother talking to other mothers and potential mothers about the questions that matter most to us as we prepare to welcome our children into the world.”

We also appreciate that Amy Julia refers to both Down Syndrome Pregnancy and Lettercase as suggested resources for women who are undergoing testing.

Amy Julia has followed up the release of her book with a series of blog posts from women sharing their different perspectives on prenatal testing, including one from our “Diagnosis to Delivery” co-author Nancy Iannone:

I Regretted My Amnio by Meriah Nichols

Why I Wish I Had Chosen Prenatal Testing by Patti Rice

What do you think? Are you grateful that prenatal testing allowed you to prepare or do you wish you hadn’t found out?

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