Book archives

Full Circle of Moms

June 28, 2013 in Book

That moment when a parent finds out that their baby has Down syndrome is etched in their memory forever. For me, isolated images are razor sharp. What I remember is my baby being whisked away to the NICU after delivery; a doctor with curly hair rattling off the symptoms of Down syndrome … something about a crease in the palm, folds in his eyes, and extra space between his toes; my 23-year-old husband crying for the first time since his mom died; and a gentle woman bringing me a book and photos of her son with Down syndrome the next morning.

When we launched the Sevenly campaign on Monday, I shared that the original inspiration for the Lettercase books was the parent support coordinator at the hospital who showed me a picture of her son on a bike. What I didn’t share was that Nancy’s son passed away from leukemia when he was 15. Josh was an anchor for his parents and brothers and sisters, and he was the inspiration for me on the day after my son was born with Down syndrome. He was funny, adventurous, loving, outgoing, impish, compassionate, and perceptive, and his death left a hole in their family.

On Monday afternoon, Nancy called me to say that her daughter was pregnant and just found out from an ultrasound that the baby has soft markers for Down syndrome. Despite the pain of losing Josh, they were thrilled at the prospect of having another baby with Down syndrome in their family. But, she wanted to make sure her daughter was prepared, just in case, so she asked if I could send her a copy of the the Lettercase “Understanding a Down Syndrome Diagnosis” book and Down Syndrome Pregnancy’s “Diagnosis to Delivery: A Pregnant Mother’s Guide to Down Syndrome.”

Thirteen years ago, Nancy shared a vision of the future with me by giving me a book and a photo. She and Josh inspired me to do the same for other expectant parents with our books, and now I have the opportunity to support her daughter. This is the full circle of moms, and it’s just one of the legacies of Josh Boldt.

It’s true that sometimes life with Down syndrome can be downright hard. Almost all of us grow emotional callouses: the first time we see our friend’s baby take their first step before our child; the first time we have to look a teacher hard in the eye at an IEP meeting and tell her our child will be included in a regular classroom and that it can be done; and the first or fiftieth time we hear someone casually toss around the word “retarded.” For a small minority, like Nancy, they cope with health challenges that can be all-consuming.

And yet, 99% of parents say they love their children with Down syndrome, and Nancy and her daughter were excited to find out that the baby has soft markers for Down syndrome — even after battling leukemia for years with Josh.

The thing is that, most of the time, life with Down syndrome is remarkably ordinary and includes family vacations, sibling squabbles, outings with friends, and school activities, with a few extra doses of therapy, annual IEP meetings, health insurance battles, and medical appointments thrown into the mix.

What I’ve learned is that people with Down syndrome are unique individuals with their own strengths and challenges, and this has given me a greater appreciation for the individuality of all people. My son truly struggles with reading and math, but he’s an amazing photographer, an avid mountain biker, and tech wiz like his dad. I’ve also learned that people need information and support right away in a moment of crisis, and the compassion of others can change our lives in profound ways. For that, I’m grateful for the extraordinary full circle of moms, especially Nancy and Josh.

Moms Make a Difference!

June 10, 2013 in Blog, Book

We’re so excited to share that we reached our fundraising goal so that we can send copies of “Diagnosis to Delivery: A Pregnant Mother’s Guide to Down Syndrome” to all prenatal genetic counselors nationwide in July! We are so thrilled that one family who used both Lettercase and Down Syndrome Pregnancy launched this campaign, and we appreciate all of you who joined in this effort with your stories and your donations to make this happen. We’re also grateful to the National Society of Genetic Counselors for their support in providing us with the contact information for the genetic counselors, and we appreciate Woodbine House as they print our books! We’ll keep you posted via Facebook and Twitter and share photos of our mountain of books as we prepare for shipping.

The Power of Moms

May 28, 2013 in Book, Diagnosis, Resources

Since May 1, we have raised $8100 towards our goal of earning $10,000 to provide “Diagnosis to Delivery: A Pregnant Mother’s Guide to Down Syndrome,” to prenatal genetic counselors nationwide. This Mother’s Day campaign was launched with a $5000 contribution from a donor who wasn’t a large organization, a corporation, or a famous philanthropist. This donor was a mom and dad who received the Lettercase book from the geneticist after their baby was diagnosed with Down syndrome and who used “Diagnosis to Delivery” and the Baby Center board throughout the pregnancy. This mom is the same mom who said these resources were her lifelines during her pregnancy that gave her hope and that she wished every prenatal genetic counselor also had a copy of “Diagnosis to Delivery” to give their patients.

This is also a mom I was able to meet in person in the Newborn Intensive Care Unit just days after her son’s AV repair a couple of months ago. I was able to hug her and rub the head of her sweetly resting boy with the tubes still attached to his resilient body. Her son is regaining his strength after surgery and so has his mom as she put into action this effort to help other families.

Since that first donation, other moms and dads have joined us in this campaign … and shared their stories with us along the way. Some of them had a wonderful experience upon receiving a prenatal diagnosis and were given support and information immediately from a compassionate healthcare provider. They want to make sure other families get the same. Others received little to no information and felt abandoned and alone. They want to make sure no other mom or dad ever feels that way.

This is the power of moms: to move past the initial shock and grief of receiving a prenatal diagnosis of Down syndrome and launch efforts to support others. To give support, compassion, understanding … and then hope for a beautiful future.

So, our mom who provided the initial funding has once again generously offered in this last week of the campaign to match donations until we reach our goal on Friday, May 31. Please join us helping her to give a lifeline today.

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.

Mother’s Day 2013: Give a lifeline

May 6, 2013 in Book, Diagnosis, Resources, Support

Last month, one mom’s story inspired us to launch a special Mother’s Day campaign. She described feeling “desperate and isolated” after learning that her baby boy would have Down syndrome, and Down Syndrome Pregnancy was the lifeline that gave her hope during that time. She told us that she wished every genetic counselor could have a copy of our book to share with other pregnant moms expecting a baby with Down syndrome.

This Mother’s Day, we’re determined to make her wish come true.

During the month of May, all donations to Down Syndrome Pregnancy will go toward providing copies of Diagnosis to Delivery: A Pregnant Mother’s Guide to Down Syndrome to prenatal genetic counselors.

Reaching $10,000 by the end of the month will cover all prenatal genetic counselors nationwide. The incredible news is one generous donor has already kicked off the campaign with a $5000 contribution; we are already halfway to our goal!

Please make a donation now to help us raise the additional $5,000 to make sure all expectant moms have the resources they need.

Learn more about our Mother’s Day Campaign: Give a Lifeline.

This month we’ll also be featuring the stories of moms who have used Down Syndrome Pregnancy and the BabyCenter Board over the years, and we’ll be including photos of our Down Syndrome Pregnancy “graduates.” If you’d like to be featured, please email your photo and story to stephanie.meredith@uky.edu.

A Good and Perfect Gift: Faith, Expectations, and a Little Girl Named Penny

December 31, 2011 in Book

A Good and Perfect Gift: Faith, Expectations, and a Little Girl Named Penny
by Amy Julia Becker
Book review by Nancy McCrea Iannone

Many of our expectant parents grapple with the grief of a Down syndrome diagnosis. Our visions of our child are shattered, immediately replaced by an image based on whatever we think we know about Down syndrome. With time, and influenced by smiles, giggles, and hugs, that image dissolves, allowing us to see our children for the individuals they are.

Along the way, we often navigate some difficult adjustment terrain. Why has this happened? Why us? Amy Julia Becker delves into these questions and more. Why does her child have Down syndrome? Is it to teach the parents something? Isn’t that a high price to pay on the child’s part? She presents these questions so eloquently, yet her perceptions change as Penny’s personality exerts itself, as her medical possibilities fade.

Often we as parents interact with the world using an external dialogue to help us maintain control, and an internal monologue to express the panic. Ms. Becker’s thoughts are deep and private, taken from a personal journal, the things we never really share with the people around us. She deftly and gently recounts the comments from others that leave her hurt, but does not spare herself from critique, questioning her own preconceived impressions and biases.

When Ms. Becker hears comments intended to comfort, such as, “She’s not really that different” her brain protests: “They hadn’t cried in the hospital. They hadn’t come home with information on support groups and questions about life expectancy. They didn’t need to report back for a blood draw on the fifth day of their baby’s life. They didn’t have the pediatrician calling daily, just to check in.” Yet verbally she keeps her game face on: “We’re okay. She’s healthy and we’re happy and it’s all good.” She doesn’t share the fear.

While comments “normalizing” her experiences are met with mental protest, comments making Penny’s birth a tragedy also trigger painful internal monologue. At first this reaction seems a resistance to pity, but as Penny grows, it is much more about Penny herself. When faced with intrusive questions over prenatal testing of a subsequent pregnancy, Ms. Becker reflects, ” I wanted to . . . shake her. I wanted to force her to spend a day with Penny, to watch as Penny told me what she did at school, and the names of her friends, and what she would like for her afternoon snack.”

Ms. Becker is forced to look at her own life, particularly on her focus on and appreciation of intellect. Unlike her sisters, she had never been involved with people with disabilities. Early on the Down syndrome diagnosis seems like something that happened to their daughter, separate, apart, negative. These thoughts evolve: “To take away Down syndrome would be to take away my daughter.”

It may be difficult for our expectant parents to see their children and Down syndrome this way. You have not walked the path Ms. Becker has walked – not yet. But reading this book will bring you the hope that you will be there some day, not reading about someone else’s transformation, but reflecting on your own. You may see much of yourself in Ms. Becker’s book. Though an exploration of her faith is an important part of her story, a parent does not have to share her faith to gain perspective from reading this thoughtful, eloquent story of self-reflection and growth.

Purchase the book:
http://www.amazon.com/Good-Perfect-Gift-Expectations-Little/dp/0764209175/ref=sr_1_1?ie=UTF8&qid=1319744742&sr=8-1

Down Syndrome Parenting 101 by Natalie Hale

December 31, 2011 in Book

Down Syndrome Parenting 101: Must-Have Advice For Making Your Life Easier
by Natalie Hale
forward by Martha Beck

review by Nancy McCrea Iannone

Every night, my daughter and I read Natalie Hale’s children’s book I Love Spaghetti. Actually, my daughter Gabby reads it to me, and we laugh about the girl kissing, hugging, and wearing spaghetti.

Reading Ms. Hale’s new book is a completely different experience. Ms. Hale now talks to us directly, parent-to-parent, sharing her experience as a parent, a teacher, an advocate, and a member of “the club,” the Down Syndrome Community.

Ms. Hale uses vignettes to illustrate, to entertain, to inspire, and to amaze the reader.
As a parent, Ms. Hale wrote down snippets of her life with her child Jonathon, who has Down syndrome. She weaves those snippets of their lives, along with the snippets from other people’s experiences, into this parenting handbook. Having been raised on “Keith stories” (tales of a family friend who has Down syndrome), I appreciate so much the behind-the-scenes peek into the clever, funny, surprising things our kids with Down syndrome say. Personal anecdotes help us see how ideas are implemented, why some steps do not work, and remind us of the personalities, the people, behind “techniques.”

Ms. Hale also provides organized advice, personal reflections, and explanations to educate parents on a variety of topics. From the simple “listen to your mommy gut” and “do whatever works” to the detailed step-by-step instructions on how to handle “the noncompliance face-off,” Ms. Hale guides the reader through the myriad of issues parents of children with Down syndrome face.

Full of practical, detailed instructions, parents will walk away with valuable advice on handling behaviors, teaching reading, interacting with medical professionals, coping with the school system, and so much more. But woven throughout is the message that you will be delighted with your child’s unique personality and way of viewing the world.

Buy the book:
http://www.woodbinehouse.com/main.asp_Q_product_id_E_978-1-60613-020-9

AP story on new prenatal testing; DSP mentioned

June 15, 2011 in Blog, Book, Medical Provider, News, Resources

This week AP reporter Malcolm Ritter wrote a thoughtful story on the upcoming non-invasive diagnostic prenatal testing and the related ethical concerns. Mr. Ritter quoted our own Nancy McCrea Iannone, and mentioned Down Syndrome Pregnancy as a resource for those planning to deliver a baby with Down syndrome. Ethical concerns of various experts, including Dr. Skotko, were explored, and for our expectant parents ready to learn more about these issues it is worth reading.

Particularly insightful was the reporter’s choice to open and close the story with the personal experience of Down Syndrome Pregnancy “graduate” Erin Witkowski. While the larger ethical concerns are important for us as a society, Erin’s story illustrates that, at heart, testing choices are very personal, and influence the “story” of each and every family. We respect the individuality of each family’s path and are proud to serve those families who have joined the Down syndrome community in the prenatal stage.

As we contemplate ethical issues, it is imperative that we applaud the efforts and successes of those involved in ensuring that every expectant couple receiving a diagnosis also receive up-to-date, unbiased, and medically approved information. We urge all stakeholders in prenatal testing to embrace the diagnosis booklets authored by Stephanie Meredith and distributed through Lettercase. A product of the historic “consensus group,” the Lettercase booklets received approval from representatives of the national Down syndrome groups and many major medical groups. These booklets are the gold standard for prenatal Down syndrome diagnosis, and anyone invested in informed decision-making should support these booklets.

Down Syndrome Pregnancy, Inc. provides that vital second stage of support, ensuring that those expectant couples choosing to welcome a child with Down syndrome have as much information and support as possible.

AP story HERE
Lettercase website HERE
Dr. Skotko’s website HERE
Community member reaction HERE

Baby Center features Down Syndrome Pregnancy’s Nancy Iannone

April 26, 2011 in Book, News, Resources

As part of its “Celebrating Moms” promotion, Baby Center is featuring Down Syndrome Pregnancy’s Nancy McCrea Iannone.  This means so much to us because Baby Center’s Down Syndrome Pregnancy discussion board has been and continues to be an invaluable resource for expectant parents as they await the birth of a baby with Down syndrome.  Our pregnancy book Diagnosis to Delivery: A Pregnant Mother’s Guide to Down Syndrome was based significantly on the discussions on Baby Center, enhanced by research and medical community feedback.  Neither the book nor this organization would exist without Baby Center and the opportunity it provided for expectant parents to gather together.  Thank you Baby Center!

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