Posts Tagged ‘ Down syndrome ’

How a “Perfect” Life Can Include Down Syndrome and Cancer

Monday, March 10th, 2014

In the April issue of Parents, we explore the world of special needs–a world we’re all living in, diagnosis or not, now that children of all abilities are integrated into our communities more than ever. We’ll be covering this topic in many ways over the coming weeks. Today, we hear from a mom named Beth Herrington, who has two 3-year-old daughters with Down syndrome and has a truly remarkable story.

At one point, I thought I had the perfect life. I was married to the perfect man, we had four perfect children, and were looking forward to the birth of our perfect fifth. On July 9, 2010, at 6:37 p.m., I learned what true perfection was. That was the day Chloe Beatrice Herrington was born. (Here’s a recent photo of her.)

Chloe was born with Down syndrome. Her diagnosis at birth took us by surprise, and led us on a journey that few would choose in their lifetime. When Chloe was only 2 weeks old we met a family that had recently adopted a baby girl with Down syndrome from Ukraine. They had adopted the baby through an organization called Reece’s Rainbow. With a little research, I soon discovered the desperate plight of children born with Down syndrome in many foreign countries: Most are put into orphanages at birth and fail to thrive. When they turn 4 years old, they age out of the orphanages and are sent to mental institutions, where they are hopelessly neglected. They never get the chance to know the love of a family.

Chloe’s birth gave us new direction. Our eyes were opened. Loving her expanded our hearts and gave us a special love for children born with disabilities. We knew this child we held in our arms, just like the four who had come before her, was perfect! And we knew in our hearts that our family was not yet complete. After months of soul searching, and scouring the Reece’s Rainbow web site, a picture of a baby girl with Down syndrome caught our eye. Eighteen months later we were on a plane heading to the Ukraine on a rescue mission we called Operation Olivia!

My husband and I spent 7 weeks in the Ukraine bonding with Olivia and finalizing her adoption. While we were there my sister, who was caring for other children, alerted me that Chloe was not feeling well. A checkup with the pediatrician included blood work with concerning results–Chloe had a very low platelet count. The doctor told us that we did not have to rush home, but that as soon as we came back from Ukraine they wanted to do a bone marrow biopsy on Chloe.

We came home with Olivia a few weeks later–fearing the whole time that we were about to jump head-first into a battle that no parent ever wants to fight. Our worst fears were confirmed: Chloe’s bone-marrow biopsy revealed that she had leukemia.

Chloe spent the next nine months in a Kaiser Hospital isolation room fighting to survive Leukemia and very aggressive chemotherapy. And fight she did! Turns out that kids with Down syndrome have awesome cancer fighting genes! (They actually do: There is a genetic mutation found only in children with Down syndrome that increases their risk of developing certain types of leukemia–and crazily enough, that very same mutation is responsible for helping children with Down syndrome respond so well to the cancer-fighting treatment plans! Also, the relapse rate of children with Down syndrome is significantly lower that that of the typical child who has gone through the same treatment.) In May of 2013 she walked out of that hospital cancer-free; this is what she looked like during treatment.

Early on my journey as Chloe’s mom, I connected with a blogger/photographer and fellow Down syndrome mom named Kelle Hampton. We became Facebook and Instagram friends and she was a great source of love and support for me during Chloe’s cancer journey. Last year on her blog, Enjoying the Small Things, she shared a project she was working on with the Infantino and Step2 companies, which make toys and products for babies and young children. They were planning a photo shoot to promote their products and asked parents to write an essay about how their child has taught them to look beyond a disability. What sparked my interest was that they were looking specifically for child models with special needs. The campaign was called “Everybody Plays” and Kelle Hampton was going to be the photographer. I wrote a quick essay about Chloe, how she inspired us to adopt her sister Olivia, and how, through her fierce battle with leukemia, she inspired thousands across the world to live their lives to the fullest. I attached a photo and hit Send.

A few months later I received a phone call from Kelle and a representative from both companies informing me that Chloe was among the 50 children selected to participate in the photo shoot–and as the grand-prize winner, we were flown to San Diego for a two-day, all-expenses-paid trip. We met Kelle and representatives from Infantino and Step2 companies. During our two days there we were moved by the beauty surrounding the event and the stories behind every child there. I’m sure I can speak for all parents there when I say the experience was one that will never be forgotten. For two days we laughed, cried, and spent hours watching our children just be children. There were no stares, no stereotypes, and no disabilities. There were just children in their perfect ways teaching all of us how EVERYBODY PLAYS!

Today both Chloe and Olivia are happy, healthy 3-year-olds. They are attending preschool and continue to thrive. Every day they amaze us with their abilities. Every day they make us smile. And every day they make us aware that true perfection dwells in them.

Over the last 2 years, through both our adoption and cancer journeys we have experienced an outpouring of love and support from family, friends, our local Down syndrome community, and from strangers far and wide. Thank you all from the bottom of our hearts. And thank you, Chloe and Olivia, for showing us how really perfect life can be.

Life With Down Syndrome
Life With Down Syndrome
Life With Down Syndrome

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Prenatal Testing: ‘Information Is Not Neutral’

Tuesday, August 13th, 2013

Ultrasound Image - Prenatal TestingGenetic testing, and prenatal screening more broadly, have become a fact of modern pregnancy. As an Ashkenazi Jewish couple, my wife and I have been tested for a staggering array of disorders, a number that has expanded with each of her three pregnancies. From well-known illnesses like Down syndrome to virtually unknown ones, many of which are specific to certain ethnic groups such as ours, these tests offer a degree of knowledge about your growing baby that previous generations would have considered unimaginable or the stuff of science fiction.

Parents.com recently published a series of articles on prenatal genetic testing, which explain the “whats” and “whys” of the process, but it was one article on the emotional side of genetic testing that caught my eye. This is a part of the process that I find is rarely discussed. In our data-driven, Google-at-our-fingertips culture, we are hungry for more information. But what do we do with that information once we have it? That’s where prenatal testing gets difficult–and, for some, is a reason to avoid it altogether.

Doctors often perform these prenatal screening tests as a matter of course, and just assume that that knowledge is essential. However, the implicit–and sometimes explicit–assumption of testing seems to be that a woman will abort her pregnancy if a serious problem is discovered. And that’s obviously not a choice everyone is willing to make, regardless of the consequences.

My wife and I struggled with this issue with every pregnancy and even before we started trying to conceive the first time. Would we bring a child into the world knowing he or she will suffer greatly or live a tragically short life? Where is the line between loving every life and having compassion on a suffering being? What diseases would we consider too horrible for a child to suffer from and which ones might be manageable?

The issue is more than theoretical to us. Our sweet, resilient, and amazingly positive 15-year-old nephew has a rare disorder called Familial Dysautonomia, a neorological disease that he’s dealt with since birth. As a result, he is developmentally delayed, consumes food through a stomach tube, can be difficult to understand when he speaks, suffers from frequent pneumonias, cannot feel pain, had major back surgery recently, and deals with countless other health problems. In addition, a dear friend of ours died several years ago in her early 30s from Cystic Fibrosis. Today, both of these disorders are among the many diseases tested for as a matter of course in prenatal testing. (Showing just how effective screening has become, some diseases typical of Jews are mostly affecting non-Jews these days, having been, in effect, “screened out” of the Jewish population.)

In contemplating this blog post, I turned to the best source I know of for advice on prenatal testing, Amy Julia Becker, an occasional Parents.com contributor and author of What Every Woman Needs to Know About Prenatal Testing: Insights from a Mom who has Been There (a book I offered an endorsement to). Amy Julia has written movingly about her daughter Penny, who has Down syndrome, and the challenges and joys Penny has brought to their family–and what her experiences have taught her about navigating the world of prenatal testing.

Amy Julia emailed me these bits of advice for people considering whether to have prenatal testing and concerned about what to do with the results:

  • Because every pregnant woman will be offered prenatal testing for genetic conditions, every pregnant woman should spend some time thinking about what genetic information she wants about her baby and why she wants that information. Information is not neutral.
  • Doctors can provide a medical context for genetic conditions, but they are not trained to offer a social, educational, or familial context. As a result, many pregnant women receive a prenatal diagnosis with lots of medical information that seems partial or less significant than a fuller picture of life with the genetic condition might offer. Women need to seek out counsel and information that goes beyond the medical realm.
  • Spending time with a family or two who have children with that condition can be a helpful way to begin to imagine a different life, full of new possibilities even as it is also full of new challenges.

In the end, my wife and I decided to have most of the tests–not because we knew what we’d do in every instance and eventuality, but because we felt that knowledge is power. Knowledge would allow us to learn, prepare, speak with others, assemble our support network, and steel ourselves for what is to come. We are planners. And these tests would have allowed us to plan. Thankfully, we’ve never had to face these questions beyond the theoretical realm, a conclusion that we are extremely grateful for.

Ultrasound image via Shutterstock.

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