Her.meneutics: Two Stories about Babies with Down Syndrome

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« Being Loved through Breast Cancer | Main | The Redemptive Narrative in Jaycee Dugard's Captivity Story »

July 28, 2011

Two Stories about Babies with Down Syndrome

In light of new prenatal testing, what story will Christians tell about children with an extra 21st chromosome?

Amy Julia Becker

“It’s a girl!”

I received these words with tears of joy when our third child, Marilee, was born. We could have known her sex months earlier, of course, but we decided to wait. And yet, as I wrote in a recent Her.meneutics post, other cultures are far less willing to receive girls with joy. In both India and China, many people receive the prenatal information that they are having a girl as cause to terminate a pregnancy.

Prenatal information always comes within the context of a larger cultural narrative. We express our dismay over the “gendercide” halfway across the globe, yet prenatal testing in the United States also comes within a cultural context. Here, prenatal testing focuses upon identifying “fetal abnormalities.” Information about such abnormalities occasionally help a baby survive through surgical intervention in utero or due to additional medical support at birth. Information can also help parents receive a child with physical or cognitive delays. But the same information is often used as the reason for having an abortion, particularly when tests identify the presence of an extra 21st chromosome, more commonly known as Down syndrome.

In recent months, researchers have found a way to conclusively identify Down syndrome using a blood test in the ninth week of pregnancy. Although the test remains prohibitively expensive, it should be widely available in the next year. Current screening tests begin as early as 11 or 12 weeks, but the only definitive way to identify a fetus with Down syndrome is via chorionic villus sampling (CVS) in the 11th week, or amniocentesis around the 18th week of pregnancy. Both of these procedures carry with them a risk of miscarriage. The new test is noninvasive, providing close-to-definitive information without risk to mother or child. It also occurs before the time many women have told others the news of pregnancy.

Researchers hail these advances as good news for pregnant women. Others who want to protect babies with Down syndrome worry that these advances will lead to a tremendous increase in abortions for women with a prenatal diagnosis of Down syndrome. (It is true that 85-90% of women with prenatal diagnoses of Down syndrome currently abort. Only 2-5% of women, however, have amnios, it was recently reported. As a result, most babies with Down syndrome are born to women who did not have a prenatal diagnosis.)

The headlines surrounding this discovery underline the cultural assumptions that a baby with a prenatal diagnosis of Down syndrome will be aborted. Time asked, for instance, “Can a New Blood Test Make Babies With Down Syndrome Disappear?” The title alone assumes that as the test becomes widespread, we will see fewer and fewer babies with Down syndrome. Similarly, ABC News reports, “New Down Syndrome Test Could Cut Healthy Baby Deaths.” Here the headline indicates that because these tests do not carry with them a risk of miscarriage, they offer a way to save the lives of “healthy” babies while continuing to identify “sick” babies with Down syndrome.

Our culture tells two stories when it comes to Down syndrome: one of suffering and eradication, and another of hope and promise. A recent article from The Wall Street Journal demonstrates the presence of hope and inclusion for individuals with Down syndrome even as it reports on these early tests. The article lists facts compiled from the National Down Syndrome Society. It not only mentions that “people with Down syndrome have an increased risk for heart defects, respiratory problems and other ailments,” but also that “many of these conditions are now treatable” and “the life expectancy for people with Down syndrome has risen to age 60 today, up from just 25 in 1983.” Similarly, congressional legislation now mandates that doctors give up-to-date and factual information about Down syndrome. Ten thousand booklets created by Lettercase.org were distributed this year to U.S. doctors to offer positive and accurate information when providing a prenatal diagnosis.

For many, a prenatal diagnosis of Down syndrome in America is akin to a prenatal diagnosis of female in China: cause for concern and even ending the pregnancy. And yet human-interest stories, congressional legislation, inclusive educational environments, and medical advances that enhance quality of life offer a second cultural narrative, one echoed by the hundreds of thousands of families that include an individual with Down syndrome. Their narrative contains some hardship and suffering — as do most real stories of real people — but it also includes love, joy, and promise.

This new prenatal test poses a threat to babies with Down syndrome only if the cultural narrative assumes that babies with Down syndrome are better off dead. If, instead, we see these babies as fellow human beings in need of care and inclusion, the prenatal information becomes akin to the information that a baby has one X and one Y chromosome.

It is unlikely that anyone will be able to stop this new prenatal test from being performed on most pregnant women. Even so, Christians can help place the information within a larger story: the story about an unexpected baby who was a source of great joy and who would endure both suffering and triumph at the end of his short life. Despite the uncertainty, the social stigma, and the fear of what might be, Mary received her child as a gift from God. When Jesus was only an infant, Mary also received Simeon’s prophecy that her son would be a source of blessing and of sorrow. He gave her the sobering words, “A sword will pierce your own soul too” (Luke 2:35).

Christians can tell the story of Down syndrome in light of the story of Jesus, with gratitude that Mary received her frightening prenatal diagnosis with humility and joy.

Comments

Well done. Anyone who has had the great privilege of knowing someone with down syndrome knows how special these people really are.

I have been mulling over this new diagnostic test for a few weeks and will probably have my own blog post soon. I will definitely link my post to your article!

Great post, Amy Julia. We can't change tests or test results, but we can help shape how they're understood--or at the very least, how WE understand them. What I like about your writing is that you do just that--place disability and difference within a context of deep faith and abundant grace so that each person's infinite worth in God's eyes comes to the fore.

Thank you so much for this post!

My wife became pregnant when we were both 43. She knew that her pregancy was high risk, so she deliberately chose not to have any invasive testing done.

When our daughter was born, we found out she had Down Syndrome. Initially, we were devastated. However, after some reflection, we realized that God sent our daughter to us because He knew we should be her parents.

Today, our daughter is a happy seven year old. She teaches us a new lesson about love and patience every day. Her eleven year old brother and his friends are her angels.

Every time I see her smile or feel the warmth of her hug, I think about the nine other children like her that never got to be born. It is heartbreaking that some people have such little respect for life.

When my second son was born in 1972 we were not prepared to hear the news that our son was not a healthy, bouncing boy. The doctors really didn't know what the diagnosis was except that he was epileptic and his brain was too small. When he was six months old, he went to an institution until his life ended on this earth one year later. There were a few with Down Syndrome and children with hydrocephalus. As I read this article, I thought about the new developments in children with disabilities and the support system is so much better than it was then. I, too, agree that these children are a gift from God, and my heart goes out to the parents of a child with a disability, as you are blessed to be their parent. I as a parent thank God to be chosen to be a parent of a special child.

People with Down Syndrome or other disabilities have much to teach our society. When we society aborts these very babies who God will use to touch many lives, we are silencing God. I am a mom of six, three have disabilities. All my children have taught me so much but I think maybe my life has been changed the most by my almost 12 year old who cannot walk or talk or do anything on his own. He is probably at the skill level of a 3 or 4 month old. I've seen God use his little life in ways He can't use anyone else's.

When did society decide that being typical was mandatory for a significant life?

I had a CHOICE 6 years ago when at 18 weeks when the doc asked if I wanted to be tested though he was more than 90% sure my baby boy would have down syndrome. God also gave me a choice when He asked me 16 weeks earlier before I knew I was pregnant, if He gave me a child with Down would I LOVE him. I was still heartbroken and prayed desperately for a different outcome - just like Jesus in the garden. It's really not about "testing the baby" but our hearts and whether we will choose to "love one another" like Jesus and give up our "life".

My blood test came back showing that my baby has a 10% chance of having downs. I broke down crying in my midwife's office from the shock of having anything but a healhty baby. The ultrasound showed that my daughter looked healthy and the dr. reduced her chance of having Down's to 5%. It is scary to think about what kind of needs and health issues she might have. But we've received a lot of love and support. God is very gracious to us as we walk through this.

Next week will end my first trimester with my second child. I'm a little older now and considered a high risk because of that. However at my first dr appt several weeks ago the dr schooled me on the various test this article talks about and even the extra costs that some insurances won't cover. My husband and I didn't bat an eye. There was no need for us to consider these tests unless there was something the dr could do to help the child while it grew inside me. She said it would just be for our information nothing more. We felt no need to even discuss it. One look and we knew we were on the same page. Under NO cicumstances would any piece of information they could give us change our desire to have this child. Our first child has some mild special needs and as challenging as it can be to meet those needs and be an advocate for him he has changed and blessed our lives immeasurably. Some might call it selfish to bring a special needs child into the world just because of the joy and growth my husband and I would receive from the child. I think its selfish to keep that child from inspiring the world to grow from his being there.

Life with a child who has Down syndrome is the best: rewarding, joyful and a tremendous growth experience.

6 months after Josh was born with Down syndrome, I attended my first parent group. I was touched by the struggle people were having with “why?” I went to bed with a heavy heart and awoke with this story. I hope you enjoy it.

http://tinyurl.com/secretjourney

Jane H: re: "When did society decide that being typical was mandatory for a significant life?" I think society is far more accepting of those with disabilities today than at any other time in history. Up until the last couple decades those with physical and mental disabilities were quite often institutionalized from birth or marginalized by their own families as well as society. I have a 10 year old niece with Down Syndrome and a 12 year old nephew with autism and they both have far more opportunity today than they would have even 15 or 20 years ago. It is a tragedy and a waste and a sin that so many would rather abort than face a future with a special needs child. I think the only way to combat that is through education and the Church leading the way by loving and fully accepting those with disabilities.

My heart breaks for every baby that has been aborted because of a Down syndrome diagnosis. Sure we were sad when we found out our unborn son had Ds but now we wouldn't change a thing...he is our joy boy!! And he inspired my website which was created to give encouragment to new and prospective parents....check out these adorable faces and positive links! www.alifeworthliving.com

I feel the need to tell my story. I was 23 years old and had an uneventful healthy pregnancy. I gave birth to a healthy 8lb 9oz baby boy after 4hrs of labor 4 pushes..out he came! He is was 20 1/8 of an inch but I didn't care. He looked at me when they placed him on my chest and then took him away after he peed on my leg...I was in an old Meddac in Germany when I had him so he was a less than a foot away at the foot of my bed...I knew in my heart he was ok but there was alot of flurry around him that was making me upset. The head Peds (a colonel) and a nurse were talking but not low enough..I heard for the doctor "What were the results of her Triple Marker" that made my world freeze for a split second and I started freaking out. That seemed like an eternity for me...they gave him back after what seemed a century went by and I asked what is wrong..he looked perfect to me, I seen a baby...nothing else. 10 fingers 10 toes. Everything is where it should have been. I went into my room and the doctor came in and said "I believe your son has Down Syndrome" I cried and after he left I felt sentenced. I called my mom and she wasn't in her right mind, she started crying..so much for her support! They did the karyotype and the doctor told me he was going to be "slow" Flash forward....I was depressed for such a long time, what did I do to deserve this? But still I didn't see down syndrome, I seen my baby and I loved him and he was better at nursing than my daughter was. 2011, he is 3 and a half....what is slow about him? NOTHING! He may not be talking fully but lord this boy keeps me on my toes! He is so loving and beautiful and I don't know what I would do if I lost him. His big sister loves him and had to get pulled from his class to another class because she was mothering him too much...he loves being held, kissed on, read to, I still ask why me at times when things get difficult but I love him so much! Everyone looks out for him especially when he undoes our deadbolt and takes off to go somewhere outside! I wouldn't trade my child for any typical child and I don't think anyone should have bloodwork. Let them find out when the kid is born, then they can decide to give up for adoption or keep...thanks for reading

Thank you for this article. As a mom of a 23 year old young woman who happens to have Down Syndrome, I worry about what the future holds for people with DS. Although society as a whole is more accepting of our children, there is a frightening undercurrent. The question "did you know?" often isn't just a casual question, but rather a judgement-- "did you choose to have this child?". The pressure from physicians to test and abort is high, and they assume if you have a positive test you will abort. The concern becomes for future discrimination of those who do choose to have a child with DS. My daughter's life has brought us so much joy, she has taught us more than we can imagine. She is not the burden that so many families are warned against. So sad that so many will miss the blessing. We must continue to tell the stories and to support the rights and services for our children as they are needed.

We have a son born with Down syndrome and life is great!

We actually do a daily one minute video everyday to show the world how great and fun liife is!

As Christians we are called to be advocates for those with no voice (babies in the womb.) I pray that we (all of us who are for life) will help our culture understand how ALL life is created in the image of God.

Great article. We found out that our youngest daughter has Down Syndrome when she was 4 weeks old. She was 9 weeks early, and the signs weren't so obvious when she was first born.

With regards to the churches responsibility to accept those with disabilities, I have written a blogpost on this. Please, stop by and comment!

Hmmm, the link didn't post to my blogpost :) Here it is...

http://just-juniors.blogspot.com/2011/07/open-letter-to-church.html

Two and a half years ago our son, Marty, was born on a crisp August morning the day after my birthday. Arriving a couple weeks early, he was the best birthday surprise I have ever received! In my arms I held the most beautiful baby I had ever seen; I couldn't believe he was mine. Throughout my pregnancy I was in constant prayer for my son. In my heart I knew he was special; bound for greatness. I wrote him a letter, encouraging him to "change the world." I knew deep down he would. I just wasn’t sure how. On the day we were to leave the hospital, I was up early feeling anxious. Marty had jaundice had to stay under special lights for what seemed like forever. I was overcome with such a powerful love for him and my arms ached to hold him. To calm the restless stirrings in mind, I turned to my Bible and read a Psalm I had bookmarked. It was my favorite passage, one that had always brought me comfort. “For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well... All the days ordained for me were written in your book before one of them came to be. How precious [concerning] me are your thoughts, O God! How vast is the sum of them! Were I to count them, they would outnumber the grains of sand. When I awake, I am still with you...” (Psalm 139:13-18a, NIV). Tears welled up in my eyes. I knew God was comforting me, but I also felt as if this Psalm was meant for Marty. I walked over to his bassinet affixed with wires and strange lights and prayed for my little son, thanking God for his precious life. Little did I know how inspiring that Psalm would be later that morning when our world would change forever. We were preparing to go home when a pediatrician came in to do Marty’s last check-up. To our surprise she informed us that he had a heart murmur. My heart felt sick. Then she proceeded to tell us that he also displayed physical characteristics consistent with Down syndrome and wanted to run some tests to be sure. The news was unbelievable. It crushed me. Her voice seemed to trail off as my ears filled with dull noise. Nothing made sense. Surely she had to be wrong. Tears finally came after she said the words, “I’m sorry.” I stepped away from our visiting guests to regain my composure. I couldn’t breathe. I wanted to weep, to cry out. So many questions and fears rushed at me. How could this all be happening? Just a few moments ago, our son was healthy and “normal.” What would his life be like now? Then, just as swiftly as those thoughts had bombarded me, the words of Psalm 139 flooded in: “For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made...” As I felt God's presence surround me, I whispered, "Ok, ok."
You see, Marty's diagnosis was no surprise to God--Who knew him and formed him to be exactly who God made him to be, and was faithful to let us in on just how special Marty was before we were given the news. When we got the call a week later confirming that Marty had Trisomy 21 (the most common type of Down syndrome) began to cry and just as I scooped up my son, I began to laugh. I realized that God in His infinite wisdom knew all along and was just adding another puzzle piece to His great plan for our lives. I thought back to high school when I first had the desire to work with individuals with special needs. I remembered my husband working at a group home, inspired by dreams serving the disabled overseas someday. I remembered reading Psalm 139 in the early hours before the dawn on the day we were told Marty might have Down syndrome. We turned back to that Psalm and read it for our son again, letting tears and laughter flow. We prayed for our son and this unexpected blessing. My husband and I weren’t sure what to expect but we knew we were about to embark on an amazing journey. The first few months were difficult as we waded through so many emotions. Sorrow, joy, fear and hope poured out to form the foundation of love we have for our son. And through the Down syndrome community, we feel as though have been grafted into a very large and wonderful family who has made our journey so much sweeter. Today, Marty is a very happy, healthy and playful two year old. People everywhere are drawn to his inviting smile and friendliness. His life exudes everything BUT suffering (what a lie from the pit that these individuals and their families "suffer"!). We cannot come up with enough words the incredible blessing Marty has been in our lives. We feel so honored to be his parents. He teaches us so much! It’s been fun to watch him learn and grow and we, too, are learning and growing as well. Our hearts have grown ten sizes to be able to contain the gift God has given us in Marty. We know he is changing his world because has already helped in changing ours. But then, what else would you expect from someone who is “fearfully and wonderfully made”?

Is this my Amber with the two beautiful boys, Marty and Silas? It has to be you... what a great article!! I loved it. What a beautiful Psalm.... God Bless!! Gramma Sue

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