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Friday, June 01, 2007

A world of "perfect' babies

The American College of Obstetricians and Gynecologists is now recommending that all pregnant women be tested to see if their fetuses have Down Syndrome.

That recommendation has set off a passionate and unexpected response from parents of children with Down Syndrome. Parents in Detroit and other cities are asking obstetricians to connect them to expectant parents who have just received the prenatal diagnosis. They want to show the unanticipated joys of raising a child who has Down Syndrome and, they say, dispel the often entirely pessimistic picture newly diagnosed families are given.

Besides offering support, the group is also hoping to give families a reason to skirt abortion and give birth to their child. It isn't a right-to-life campaign, per se, but in part to make families -- and society -- realize that disabilities are part of human life. Their other motivation is to make sure that their own children with Down Syndrome don't become a smaller and smaller population, with few others like them in their communities and little support or advocacy for their care.

It is a thought-provoking and complicated issue. Should there be more widespread testing for this and other disabilities? Are we becoming a society with less tolerance and less respect for children who enter the world with physical or mental difficulties? And what kind of messages and advice should families receive when they get a prenatal diagnosis of Down Syndrome and other disabilities? I'd like to hear your thoughts.


29 Comments:

at 5:27 AM, June 02, 2007 Anonymous Anonymous said...

My children are 20 and 16 years old, and I'm sure testing procedures have changed in the years since I went through pregnancy. But if there is any risk to the unborn child in doing these tests (as was the case 20 years ago) I do not think these tests should be "routine".
Because of age and health, it was recommended I have some of these tests performed with my second child. But I told the doctors that the results wouldn't make a difference in the pregnancy - I would still carry my child to term and deliver. If they couldn't assure me there was no risk to the child, I didn't want the tests.
I had a perfectly healthy child (ok - he's now an obnoxious 16 year old, but that's life!), but if he had been born with Downs or some other genetic abnormality, he wouldn't have been loved less.

The ONLY reason I see for these tests is to help prepare the parents, help them get support in place, etc.

No one is "perfect". And all persons "teach" us with their "imperfections".

 
at 8:05 AM, June 02, 2007 Anonymous Anonymous said...

In 1999 we had a little girl, Rachel Ann, who was diagnosed with trisomy 18 a couple of months before she was born. Because I was 41 at the time, we had worried about Down Syndrome (trisomy 21), but that would have been a blessing because trisomy 18 involves an error in cell division on the 18 chromosome, which is larger than the 21st chromosome that causes Down Syndrome and babies born with trisomy 18 have even less chance of survival (it is "incompatible with life" as the medical people put it). We did research and found that about 5 percent of trisomy 18 babies make it past their 1st birthday, and we determined that our daughter would be one of them. She wasn't. She lived 6 weeks, all but the first 4 days at Children's Hospital at home with us. When my endocrinologist found out about the trisomy 18 diagnosis he asked matter of factly: "Are you going to terminate the pregnancy?" To me it was not just a pregnancy. I was carrying our child. I responded in horror that no, I was not going to kill my baby. Fortunately, my OB, Stewart Friedman, was very supportive of our decision. We decided to give her a chance at life, and we have never regretted that. Her life was brief but full of love. All of our friends and family got to show her love. We got to know her. Except for her being very tiny and having to be fed through a tube in her nose, caring for her was like caring for our two sons when they were babies. She wore soft cotton clothing, got to listen to music and be held and rocked by everyone. As she got older she would fuss when she was hungry and seem content when she was full. She could see and hear and responded to voices and tracked our faces with her eyes. She seemed happy. She gained an entire pound during her life, one quarter of her birth weight. The week before she died, she quit breathing a couple of times, but my husband was able to get her to breathe again. Then on Christmas morning 1999 I put her down in her pumpkin seat for her nap after we had opened presents (and she got to enjoy hers, responding with wiggles and interest to a toy that made noise and the textures in a baby book). I napped on the bed beside her (we had stopped using the crib because the hospice nurse said it was easier for her to breathe sitting up slightly in the pumpkin seat). After I dozed a little I heard her make a little gasp. I checked and she didn't seem to be breathing. I screamed for my husband and called 911 (even though we had signed a do not resuscitate order, we didn't really mean it), but no one could bring her back. She was pronounced dead at the hospital. It was terrible and heart wrenching, but we have no regrets. We gave her a chance at life, we welcomed and loved her. We enjoying her as long as God gave her life. Our technology has outpaced our wisdom in this area. It was so weird walking around 8 months pregnant with strangers making friendly comments about when the baby was due and trying to respond normally when you didn't know if your child would even survive the trauma of birth. My husband wondered if we would be sending out birth/death announcements. No one can tell you how affected your child will be by any of the things they diagnose prenatally, such as trisomys and spina bifida. Rachel had 3 heart defects but didn't have many of the other serious defects that can go along with a trisomy. Children's Hospital said she was not a "candidate for surgery" to repair the defects because she wouldn't survive the surgery. They were wonderful, and the StarShine Hospice at Children's Hospital was unbelievably great to our family. Without them I wouldn't have known how to feed or take care of Rachel. They even had a social worker who got our grade school aged boys to talk. But we haven't regretted our decision to bring Rachel home (she wasn't really living in the hospital all tied up to machines that beeped discordantly and all the tubes stuck into her). And for us, killing her before birth was never an option. As you can see, I could write a book about this, but it's a subject I feel strongly about. Some families might have had a different experience, for example if their children were in pain, but for us giving Rachel the opportunity for life was the best decision.

 
at 12:15 PM, June 03, 2007 Anonymous Anonymous said...

Even for those expectant parents who would not consider aborting a fetus with a disability, there is merit to prenatal diagnosis of Down syndrome. Parents who elect not to abort after a diagnosis of major disability have seven months before the birth to understand, accept, and plan for their child’s special needs. Having time to absorb the shock and to grieve, they can rejoice in the birth of this child --- one they chose with foreknowledge to bring into the world. It’s difficult enough for parents to meet the 24-7 demands of any newborn, so imagine the impact of a newly discovered disability on top of that. These exceptional parents can truly say this child was ‘wanted’, often a key ingredient for a child to be and to feel loved.

 
at 1:33 PM, June 03, 2007 Anonymous Anonymous said...

I have a younger sister who has down's syndrome. I know firsthand how my sister's disability affected my family. My parents never stopped worrying about how she was going to be cared for while they were alive as well as when they passed. My mother started drinking as a result and my father stopped smiling. We NEVER talked about her. My parents NEVER took us to see her. When my parents returned from a visit to the home where she was and still is cared for, their faces were so sad and strained. My mother told me later in life that had she known my sister had down's, she would have had an abortion. With my pregnancies, I had amniocentesis to determine if the baby had downs. Had it been positive, I'm not sure what I would have done. But I support a woman's right to have the option of terminating a pregnancy.

 
at 8:35 PM, June 03, 2007 Blogger cindy said...

I agree with the parents who are concerned about mandatory testing for Downs Syndrome.

My sister had Downs. She was the heart of my family and was loved by everyone who knew her.

If families receive advice about their fetuses, it should also be from families who know what a blessing such children can be.

 
at 9:20 PM, June 03, 2007 Anonymous Anonymous said...

When the Doctors make it mandatory to give a prenatal diagnosis of Down Syndrome, are they going to give good supportive facts and link families up to appropriate services, or will they still remain as reckless as they are today.

Will they say that having a child with down syndrome is not the end of the world.

Will they say that children with down syndrome are amazing people and deserve to walk the same land as anyone else.

Will they say that children with down syndrome can learn and graduate from high school, go to college get a degree and earn real money with a real job?

Will they say that our children date get married and live independent lives?

Or are they going to continue with thier reckless actions and offer little support, and recommend alternatives?

When you provide this kind of testing, we also need to provide support. As of today this is not happening, and I worry about the genocide of down syndrome.

 
at 11:00 AM, June 04, 2007 Anonymous Anonymous said...

what has happened to all the PRO-CHOICE advocates? this is exactly what the pro choice movement has been about,giving a woman the right to choose to have her baby or not. If the child is diagnosed with Downs and the mother makes the choice to abort then the pro-choice crowd ought to be cheering. The mother has been given the ultimate power over not only life and death but the quality of human being born into this world. Isnt that what choice is all about? Is the child afforded the same power?

 
at 6:02 PM, June 04, 2007 Anonymous Anonymous said...

I feel fortunate to have had Lucas, Caroline, Rose and Joshua in my preschool class. We watched them grow socially, communicatively and academically ... dramatizing stories, counting the legs on a spider, finger painting, dancing with scarves and swinging on the swing with their friends. Their parents were supportive,loving and like many parents; wondering what the future will hold. I support those "parents in Detroit and other cities asking obstetricians to connect them to expectant parents who have just received the prenatal diagnosis". They want to share the joy "raising a child who has Down syndrome" has given them .... as a matter of fact, I know a few parents, too!

 
at 8:55 PM, June 04, 2007 Anonymous Anonymous said...

The issue is not "thought provoking and complicated." People are not to murder other innocent people at any life stage, even if the latter are disabled. No discussion needed.

 
at 1:06 PM, June 05, 2007 Anonymous Anonymous said...

Someone mentions "where are the pro-choicer's". To me, this isn't a case of pro-choice and pro-like (I will keep my opinions on that private). It is about making an informed decision based on facts, and knowing in your heart that you can live with your actions.

As someone who's daughter was prenatally diagnosed with Down syndrome, I can tell you that the way the news is delivered is down right scary. It is no wonder there is a 90% termination rate. The news is delivered by some *trained* to do this called a genetic counselor. Thank goodness I researched the truth. This woman told me lies and outdated statistics! It is because of this misinformation that lives are being taken away!

How many moms went through what I went through, got that same treatment, and thought the doctors and counselors were right. They push for an amnio when something looks wrong, and they talk like they assume you will terminate. I have talked to parents across the country, and it is the same in most cases.

So, the women that go through this and do terminate see my daugher in this community in the years to come and have to live with what they did.

The issue here is the power that these medical professionals have! They give advice and tell lies to steer patients in a certain direction. 90 PERCENT!! Think about it. And keep in mind that there is a waiting list of people wanting to adopt babies with Down syndrome.

My daugher is smart, and funny, and loves life! She doesn't suffer! She had a heart repair at 3 months old, and we have some rough spots in that first year, but it was worth every minute. I know without a doubt I am a far better parent to both my daughter with Down syndrome and her younger sister, and I am a better human being for having my daughter.

 
at 1:17 PM, June 05, 2007 Blogger Unknown said...

I am the mother of a beautiful 4 year old daughter who has Down syndrome. Yes, she has developmental delays, but is very healthy and is progressing developmentally, just a little later. She is loved by everyone who comes in contact with her, and she is very social and loving in return. I have a lot to learn from her as she grows, as she sees the world already in a very innocent and positive place. Everyone can learn from her.

The notion of more and more technology to weed out these babies who may have DS is a shame to humanity and society. It offers a eugenic vision on the world, which is completely ethically wrong. Without children like my daughter, this world will be a dark place.

Why scientists don't use the money that they use to come up with more pre-natal tests to further what causes DS, or even cures, is beyond me. It shows what kind of society we are driving to: weeding out the imperfect.

 
at 9:30 PM, June 05, 2007 Anonymous Anonymous said...

While I'm glad that these mothers support their wonderful downs children and say what a better world it is because they are in it, let's not forget the other part of Downs...these children will remain children forever. Happy perhaps, but all the worries of who will take care of them later in life tends to fall on the rest of societies shoulders as public assistance

 
at 10:12 AM, June 07, 2007 Anonymous Anonymous said...

I am a young woman with Down syndrome. I am so sad to hear about
all the babies with Down Syndrome who are aborted. I think this is
like genocide -- the systematic killing of a whole people or
nation.

I have a full and wonderful life, and the world needs to know that
I do not "suffer" from Down syndrome. Most people I know with
disabilities have full and productive lives.

My heart breaks when I think that I might be part of the last
generation of people with Down syndrome. The world will never
again benefit from our gifts. But I will continue to hold hope for
people with disabilities. And I will pray for all the people who
think we don't have the right to live.

BRIDGET BROWN

 
at 2:40 PM, June 07, 2007 Anonymous Anonymous said...

Bridget ---
Did you write this yourself? I myself have been the victim of "letters" from my sister who has Downs. She cannot write, she cannot communicate, she cannot go to the bathroom without assistance, she must be medicated to have a dental exam. She is 41 years old and was never expected to live more than three months.

 
at 8:44 AM, June 08, 2007 Anonymous Anonymous said...

One of the anonymous posts said that "these children will remain children forever." I just want to set the record straight here. People with Down syndrome lead very fulfilling and productive lives. Yes, there is a spectrum of the degree of cognitive issues, but most of the people with Down syndrome fall in the mild to moderate range of mental retardation. And because more opportunities are available for peole with disabilities and we have higher expectations for them, they are achieving great things.

I know of several many successful young adults who have accomplished great things. One young woman from Oregon who is in her twenties swam her 1/4 length of the English Channel on a 4 person team. She also "escaped from Alcatraz" last summer as the swimming leg of a triathelon team, and plans to repeat that feat this summer. Another young woman from Iowa moved here alone, leaving her family in Iowa for a job that was offered to her in Cincinnati. She had her own apartment and arranged her own transportation and lived very independently. Same holds true for a young man from New York that moved here leaving his family behind in New York. I also know of many young adults, i.e., known as self-advocates, from Cincinnati, living independently, working at major corporations, complete with full medical coverage from their employer. I know of some who have completed the rank of Eagle Scout, several who serve on non-profit boards, many who travel the country giving motivational speeches, and many others who I consider having a very successful, fulfilling and happy life.

Opportunities are very different for people with cognitive issues these days. Since 1976, when federal law mandated the education of children with disabilities, (and even before, which is what precipitated the mandate), parents of these children have demanded changes be made -- and for the better. Now post-secondary opportunities are available for people with cognitive disabilities. We've come a long way since the MR room was in the basement of the school so no one would have to come in contact with students with disabilities.

I think you are short-changing people with Down syndrome. Your attitude reflects all the dated (and wrong) stereotypes -- that they remain children forever, that they're very happy and loving people (by the way, they have the same wide range of emotions as the rest of us), that they are a burden to society.

Open your eyes. The world is full of people who are all different. I like to compare it to a box of crayons. If the whole box were full of red crayons, the picture you were coloring would be very boring. The variety of colors in the box make it a vibrant and exciting picture.

 
at 8:53 AM, June 08, 2007 Anonymous Anonymous said...

What constitutes a "perfect" baby? What guarantees do you have about the future of any child? What defines self worth? I invite all of you to watch a short video at http://www.simpletruths.com/simpletruths/a.aspx?af=219&mo=stsr.

It's about Johnny the Bagger: A True Story of Customer Service, which celebrates the incomparable power of customer service delivered from the heart. Based on the work of noted author and speaker, Barbara Glanz, this inspiring short film clip features the true story of "Johnny," a young man with Down syndrome who made a positive choice about his personal responsibility to provide from-the-heart service and changed the culture of an entire organization.

After watching it, I think you'll agree -- the world would be a much better place if we had more Johnnys.

 
at 11:59 AM, June 08, 2007 Anonymous Anonymous said...

I am the Executive Director of the Down Syndrome Association of Greater Cincinnati (DSAGC). We were established in 1981 by a small group of parents who envisioned better opportunities and services for their children with Down syndrome. That vision became a commitment to providing services and programs that support and educate self-advocates, families and the community. Today, the DSAGC provides over nineteen programs and services, all free of charge to over 1000 children and adults with Down syndrome and their families in our nine county region.

The mission of the DSAGC is to provide information, resources and support to individuals with Down syndrome, their families and their communities. The DSAGC envisions partnering with families in collaboration with other organizations to create an environment in which individuals with Down syndrome are welcomed with fairness, enthusiasm and encouragement in the community. Inclusion is a goal embraced by all.

The testing recommendation from American College of Obstetricians and Gynecologists sparked a passionate response from Down syndrome communities across the United States and Canada. Our community is encouraging health care professionals and organizations to partner with Down syndrome organizations to ensure the wide-spread proliferation of balanced, accurate and up-to-date information to expectant parents and to work together to ensure that expectant parents are not unduly influenced to undergo prenatal testing or to terminate a pregnancy after receiving a prenatal diagnosis of Down syndrome.

The DSAGC Board is spearheading a project to create a video that will be offered to Greater Cincinnati ob/gyn offices to give to parents who have just received the diagnosis. The goal of the video is to make sure the parents get the whole picture of having a child with Down syndrome. We want to let expectant parents know about the unanticipated joys and dispel myths by highlighting the extraordinary lives of local people with Down syndrome. We also want expectant parents to realize that there are many resources available to them. Once the video is made, we are going to ask teams of volunteers to visit the ob/gyn offices in Greater Cincinnati (and bring them lunch, of course) so we can explain what we are doing and offer them these free videos.

We will also be inviting ob/gyns to connect the expectant parents to the DSAGC so families can arrange to spend time together and see what it is really like to parent a child with Down syndrome.

We also are starting a campaign with our families to send pictures of their children and adults with Down syndrome to the ob/gyn offices. Once that baby leaves, the ob/gyn may have no clue that they went on to be Boy Scouts, artists, tax payers, etc. We are asking them to put up the pictures at their office so everyone who sees them will realize that people with Down syndrome have much to offer their community.

The DSAGC has a packet of information specifically for expectant parents that we have been sending out for many years. We will send it to anyone free of charge. The packet has reflections from parents who child with Down syndrome was diagnosed before birth, and advice for new families in search of information and resources.

If you (or someone you know) are interested in learning more about how the DSAGC can help you or you’d like to assist with this campaign, please contact the DSAGC by email (dsagc@dsagc.com), phone (513 761 5400), or by our website (http://www.dsagc.com/). We’d love to hear from you!

 
at 7:18 AM, June 11, 2007 Anonymous Anonymous said...

Here we go again with this issue!! My son is 19 years old and I know that this "testing" topic has been presented several times in the past. Does anyone remember Alpha feta protein testing? How many babies were aborted because of the results of this inaccurate test? Then there were "shakes" that we were supposed to give our kids that would make them "more normal" and lighten their appearance of "downs". No blind study - only blind faith. I would love to know how those kids are doing..

Here's the reality -- yes, Down syndrome changed our lives -- good and bad. He is our 4th child and I can tell you that sometimes it's not easy. I know what we perceived his life to be before he was born. As parents with had a perception of all 4 of our kids. After he was born, my oldest child was diagnosed with Stargardt's disease at 13 years of age. She is legally blind at 31 years old, but is married and a wonderful mother to my 3 grandsons. She can't drive -- that's the only drawback according to my grandsons. She still helps them with their homework and reads to them. My second child at 29 still is trying to find himself in this world. Has a bachelor's degree that he worked hard for 10 years to achieve and has finally found a job that fulfills his dreams. My third child is in her 3rd year of college and still trying to find her niche. And then theres my 4th child. He is a junior in high school and loves life, his family, animals and a host of other interests. Like his siblings, he has had his struggles with school and life and will continue to have struggles, just like the rest of us. I worry about him as well as my other kids and my grandkids, however, the older he gets and the more mature he gets, the less I worry. He will always have his brother, sisters and nephews to be around for him. He will decide his future and follow his dreams - on his own time.

Life is sometimes so confusing and fast. If there is anything that I can say that my son has taught our family it would be for us all to slow down and enjoy the time we have on Earth. Respect the differences that we all have. Be brave and make your life what you want to make of it. Maybe the reason for having a child with a disability is for us to slow down and enjoy our lives and not hit the ground at birth at a dead run.

I would encourage any parent who thinks they might have a child with Down syndrome to do what we did when our son was born. The geneticist told us all of the things he would not do -- none of the things that he would. We were fortunate enough to have the Down Syndrome Association of Greater Cincinnati in our area. They have the Infant Action Meetings and we decided to attend with our son so that we could see what kids with Down syndrome COULD do. I had a fear of the unknown. When I saw those cutes babies ages birth to 2 years old, I knew that we would be okay.

 
at 8:54 AM, June 14, 2007 Anonymous Anonymous said...

I am a 33 year old woman who had the prenatal testing done that Dr.'s are recommending for all women now. I opted to have it because of an early ultra sound that indicated a Down syndrome "marker" on the back of my baby's neck. The test was not invasive and resulted with a 1 in 75 chance that my baby had Down syndrome. At that point I opted for further testing. It was my choice. My daughter who is now 3 and a half was born with Down syndrome. Knowing in advance for me was a blessing. She received prenatal echocardiograms and further ultra sounds that helped us be prepared for her delivery. My pregnancy after knowing she had Down syndrome was painful. I mourned losing a child that I had planned to have. I never considered not having the child at all, but got through a difficult time and was prepared for her birth which my family and I celebrated with joy. Unfortunately I know not everyone would do the same as me. I believe Dr.s' have a HUGE responsibility to educate women who do get a positive Down syndrome diagnosis to the success stories. This is not the 1960's. People with Down syndrome live full wonderful lives. I was so pleased to see a front page article in yesterday's paper sharing the success of people with disabilities in the work place. People with disabilities in the community interacting with others,doing their jobs well. The way it should be!!! Inclusion, and diversity are what should be considered when a woman receives this news. I was told to speak with a genetic counselor to "discuss my options". It was a cold, dry response to traumatic news. Fortunately I knew to contact someplace like the Down Syndrome Association of Greater Cincinnati. I was given a mentor who helped me through a difficult time. I met other families that were leading happy lives. I walked in the Buddy Walk when I was pregnant with my daughter. It changed my outlook so much on what my life would be like. I watched people celebrate people in their lives that had Down syndrome. I had current information and statistics. I met others who could help put me in touch with professionals who wanted to make a difference in my child's life. Outreach is the key here. Dr.'s have a responsibility to give all the options, not just the "medical" options.

My daughter has brought more joy to my life and the life of everyone she knows. She has delays, but just finsihed her first year of preschool where she made tremendous gains. She is not the child I dreamed of having when that test result came back positive, but she is far MORE than I ever imagined and dreamed. Her gifts will touch all she meets and I have no doubt she will live a full, independent life. I have high expectations for her and know that she will make a difference in our community.

 
at 10:04 AM, June 22, 2007 Anonymous Anonymous said...

I am the mother of four children (two step and two natural) and three out of the four are special needs. The two stepsons have ADHD and my youngest daughter was born with Down Syndrome (Trisomy 21). I did not have the testing done while I was pregnant - quite frankly, I didn't want the stress and I knew whatever the case I would love my baby. Yes, that's right, I said stress, there are so many different opinions on raising a child with down syndrome. I was raising two stepsons with ADHD (a very hard thing sometimes) and a toddler and I think I would have been scared. Once she was born and I found out that she was born with downs, I didn't care because she seemed perfect to me. She was a baby and I, along with my husband, loved her as a baby. We did have lots of questions though about down syndrome. The hospital was nice enough to hook us up with the Greater Cincinnati Down Syndrome Association. In turn, they gave us lots of information to help us learn and a parent came to visit us. That was so beneficial to us. While she was still a baby, we had time to research avenues to help her have a successful life. The most concerning thing when she was a baby was she was born with a heart defect. I gave up my career and stayed at home with her and the other kids. After her surgery at 4 months old, we started therapies and working with an early child intervention. The combination of these was a huge success for Mary Ellen and I feel she had a great start. I had some family and friends question me why I didn't have the pre-natal testing, I just answered that she was our baby no matter what. I know that may sound ridiculous at some degree but we had plenty of time to learn while she was still a baby and ENJOY her while she was a baby. Do I worry about her future? Sure, but what parent doesn't. She is seven now and beautiful and determined to say the least. She is always happy and wants everyone to be happy. Somedays in this stressful world, I think she is what keeps me going because you just can't be in a bad mood around her. I would also like to point out that she opened a whole new world to us and I'm happy that she did. I've had the opportunity to network with other parents and help one or two along the way and I just can't explain the blessing of that. I wouldn't change my daughter.

 
at 10:16 AM, June 22, 2007 Anonymous Anonymous said...

I feel so much sadness when I read comments from people who sound so misinformed. Our society is becoming too focused on quick fixes. If it doesn't work - get rid of it - don't be bothered.

When my daughter was born 24 years ago the diagnosis was unexpected, but the love for my baby carried me through and I quickly connected w/another parent and the DSA.

Our family raised her w/so much love and support. She lives a very productive, happy life.

As a parent we do our best to raise our children to be kind and caring individuals. Every parent has expectations - but no one knows what they will face in the future.

I do feel that advanced notice of having a child w/challenges can only benefit the parents, so they can become educated and aware of the positive outcome vs just hearing the negative. Meeting parents and individuals w/DS would be the best resource for new parents.

 
at 10:35 AM, June 22, 2007 Anonymous Anonymous said...

I am a mother of a child 19 with Down syndrome. I was fortunate to live in Cincinnati where many services and support were available to me. Why is the pre-natal testing just for Down syndrome? What about every other genetic defect, disability? My son graduated from high school this year and went to the prom. He has lots of frends, both with and without diabilities. He will be a strong member of his community and hold a job. And most of all, he has taught his family not to be greedy and to love each other no matter what. If we are going to do pre-natal testing, let's do it for all disabilities that we can. Why single out Down syndrome? Are you going to get rid of a child after he/she is diagnosed with Autism? I don't mind a woman having the choice, but make sure they have all the information they need before they make that choice and don't allow OB's to deliver the diagnosis without letting them know about all the information that is available.

 
at 11:54 AM, June 22, 2007 Blogger Jeff Jasinoski said...

If I'm understanding this correctly, the medical field is pushing for mandatory testing of fetuses to determine if there are chromosome (genetic) abnormalities, so that parents can elect whether or not to keep their baby, if a genetic abnormality is detected.

If this is truly the case, I completely OBJECT! Making it MANDATORY is where I have a problem. Even recommending that ALL pregnant women be tested is crossing the line, in my opinion. I would never force or even suggest to someone that they do the testing so that they can find out something that they may not be ready to discover or may not want to know/hear. On the other hand, I would never suggest that they not get the testing done, if that was something that they wanted to do. The purpose of the tests (from my perspective) is simply to have more information to prepare for the upcoming birth.


My wife and I are expecting our third child and we recently chose to have a non-invasive test done (a blood test and a high-leveled ultrasound) to determine the likelihood of having a child with a genetic abnormality. We did it simply because we wanted to be prepared in advance.

The issue for us is a matter of valuing and supportin LIFE; all life (especially the life of an unborn child)! And yes, an unborn fetus is a life; it's a child and deserves a chance to live (whether it has genetic abnormalities or not).

Now lest you think I'm speaking out of turn, let me share our story.

When my wife was pregnant with our second child, as we went for her 16-20 week ultrasound, they discovered that our unborn fetus (which just happened to be a boy) had dialated kidneys. They informed us that was a very normal occurence in boys during utero and that the chances were that it would clear itself up on its own. They didn't stop there though. I wish they had, but they didn't. They went on to inform us that in a low percentage of cases, dialated kidney also served as a "soft marker" (a term doctors use to indicate the potential and/or probability of a baby being born with a genetic abnormality) for Down Syndrome (which is also referred to as Trisomy 21).

So it was recommended to us that we go have another ultrasound done. We scheduled the level-2 ultrasound for the express purpose of taking a closer look at our son's dialated kidneys and also to look for any other "soft markers" (the more soft markers that are discovered, the greater the chances of having a child with a genetic abnormality).

During the ultrasound they discovered his kidneys were functioning properly (yet still dialated), but they didn't discover any other soft markers. Based on that test, we were told by every physician in the medical field who was handling our case (and there were a lot of them; 7-10) that it was their medical opinion that the dialated kidneys would clear themselves up (which they did) and that we were going to have a "normal" baby boy.

Well, something just wasn't sitting right with my wife. She felt something was definitely not right with our unborn baby boy and whenever my wife gets a "gut feeling" she is ALWAYS right about it. When she shared her concerns with me and our doctors, I knew in my heart we were going to have a baby boy who would be born with Down Syndrome (and remember my wife was only 16-20 weeks into her pregnancy).

Despite knowing this possibility existed, I can honestly say that we never once considered, mentioned, or even thought about TERMINATING the PREGNANCY or giving our son for adoption!

Now I'm not going to lie to you. We were NOT DELIGHTED with the prospect of having a genetically abnormal son...we hated that thought! In fact, we prayed desperately that our child WOULD NOT be born with Down Syndrome!

I have to confess my faith in a loving God, who always does what's right and best for me, was dramatically challenged during this entire ordeal. I struggled mightily relating to God. I didn't want to talk with Him. I wanted to shout Him. I wanted to hit Him. I was angry with Him. I questioned His goodness. I doubted His promised. I honestly felt He was going to punish me (through the birth of a son with Down Syndrome) because of the mistakes (sins)I had made in my life.

Well, on June 1, 2005, our son was born and yes, he was born with Down Syndrome.

Our birth experience was completely different from our first child's. Hers was joyful, exuberant, and hopeful. His was beautiful (how can the birth of a child be anything but that), but it was also extremely traumatic, almost haunting. What we feared, our worst nightmare; had now become our living reality. We were now the "proud" parents of a beautiful baby boy who had the most amazing blue eyes, a smile that lights up the world around him, and just happens to also have been born with Down Syndrome. Against our better wishes, my wife, my family, and I had now been inducted into an elite group; living with a Special Needs person.

The name we had chosen for our son, just didn't seem to fit after looking at him. So, after a day of thinking about it, we chose a new name - Isaac. Isaac is a good, strong biblical name (Isaac was the promised son of Abraham and Sarah)and it's meaning is powerful, poetic, and prophetic. It means "He will laugh".

It is the perfect name for our son. He is a joy to be around. I feel privileged to know him. I am honored to teach him. And I'm humbled to learn from him. In his brief two years on this earth, he has already taught me so much. He truly brings much of the laughter and fun in our family. He has taught us to not take ourselves too seriously. He reminds us daily that life is too short; that we shouldn't sweat the small stuff. He inspires us to love unconditionally, to accept people at "FACE VALUE". Isaac is our living miracle. He continues to change our lives on a daily basis. I'm a better person because of him. I am so grateful that God chose to give him to our family. I honestly couldn't imagine my life without him. I know if you had the chance to personally meet my son, Isaac, even if it was only for a moment, you'd be left with the lasting impression that their is a goodness in him that surpasses and supercedes intelligence, comprehension, looks, and normalacy. He brightens the day of everyone who interacts with him (directly and indirectly).

People with disabilities (particularly Down Syndrome) are beautiful and remarkable. They impact the world around them in such powerful, life-altering ways that the world must fight to protect, promote, and include them; not eliminate, diminish, and exclude them! As the old saying goes, "Beauty is in the eye of the beholder."

My challenge to each of us, is to behold the beauty of those who are "different" from us. Embrace our differences. Celebrate them. Learn from them. Share them with the world around you. Revel in life.

Prenatal testing isn't the "end all". It's a great way to inform parents and prepare families for the addition of their new child, but the tests should never serve as a way to help parents choose whether or not they want to keep that child as their own (simply because that child may be born with a genetic abnormality). If this testing does happend to become MANDATORY, I strongly urge that it also become MANDATORY that doctors connect the expectant parents with other parents who have children with genetic abnormalities. People need to support and stand by other people, especially if those others are not as "capable" of standing up for themselves and their rights! Every person deserves to be given a fighting chance to leave their mark on our society in a positive way. People with disabilities should be given that same chance. If we end their lives before they begin, we cheating them and those they would have impacted - we are hurting ourselves too, simply because we fear that child will not be normal (or perfectly healthy). What is normal? What does it mean to be perfectly healthy? Last time I checked, I didn't discover any one that I know of in the world that is perfect. Are you?

 
at 1:27 PM, June 22, 2007 Anonymous Anonymous said...

Here is an article from Denmark. They started testing every pregnant women for Down syndrome in 2004 and now they report (somewhat proudly, it seems to me) that they have halved the number of births of people with Down syndrome. This is the worst nightmare of advocates and the people themselves with Down syndrome!


Non-invasive Screening in Early Pregnancy Halves Down's Syndrome Births

A recent research has found that non-invasive screening in early pregnancy reduces Down's syndrome births by 50 percent.

Professor Karen Brøndum-Nielsen, of the Kennedy Institute, Glostrup, Denmark, has demonstrated that non-invasive screening of pregnant women with ultrasound early in pregnancy, combined with maternal blood analysis, has reduced the number of children born in Denmark with Down Syndrome by 50 percent.

Professor Brøndum-Nielsen also explained that another advantage of the introduction of this practice in her country was a plunge in the number of invasive pre-natal diagnostic procedures from 11 percent to approx. 6 percent of pregnancies.

In September 2004, the National Board of Health in Denmark recommended new guidelines for prenatal diagnosis.

"Previously this was restricted to pregnant women over 35 years of age, but since the implementation of the new guidelines it has been available to any woman who wants it," Professor Brøndum-Nielsen said.

The women were offered a measurement of nuchal translucency in the fetus by ultrasound. This test looks at thickness of the black space (fluid) in the neck area of the fetus. If there is more than the normal amount of fluid the risk of Down syndrome is increased. Likewise if there is a certain combination of serum markers in the maternal blood test, taken at the same time, there is the possibility of an increased risk of a chromosomal abnormality. The combined screening is carried out at 11 to 14 weeks of gestation.

Professor Brøndum-Nielsen and her team looked at the effects of the new guidelines in 2004, 2005, and 2006, in 3 counties in Denmark with a total population of 1.1 million inhabitants, or about one-fifth of the population of the country. They compared these findings with national figures obtained from the Central Cytogenetic Registry, which confirmed the reduction in invasive procedures and the number of children born with Down syndrome at national level.

"When we looked further at the history of children born with Down Syndrome, we found that their mothers had declined the offer of screening, or had taken it up too late in pregnancy", she says.

Women whose test results showed an elevated risk were offered an invasive procedure (chorionic villus sampling or amniocentesis) to certainly corroborate or exclude the diagnosis of Down syndrome by chromosome analysis.

"We found that making non-invasive screening available to all pregnant women meant that the numbers of invasive procedures decreased by 40% between 2004 and 2006", says Professor Brøndum-Nielsen.

"Although we have not yet studied the whole of the population, these numbers are significant enough to show that the new guidelines have been accepted by a great majority of Danish parents. However, there is a need for analysis of the psychosocial aspects, both as to the pre-test counselling and the women´s attitudes," she says.

 
at 2:24 PM, June 22, 2007 Anonymous Anonymous said...

Recommendations are just that -- recommendations. No woman must abide by any "recommendation" given to her. It is important to take an active role in prenatal care and to choose a course of action which will bring about the best possible birth for one's children and one's self.

The danger of this particular "recommendation" is that it offers knowledge without recourse. As can be seen by many comments here, there is a great deal of ignorance about Down syndrome, its complications, and its prognosis. Information without understanding is a very dangerous thing. If the ACOG has taken upon itself to recommend testing which has a 90% abortion rate, then the college would do well to also "recommend" training in the diagnosis and all it entails (good, bad, and indifferent) prior to testing taking place.

I am not one to listen to most recommendations of a profession far too riddled with litigation to allow the natural process of gestation and birth to occur. In fact I have chosen to birth outside of hospitals, because many "recommendations" imposed on women in hospitals don't allow me to have a safe environment for birth.

My daughter was gently born into the arms of my husband at home. She was tenderly welcomed into our family with a quiet reverence for her life. She has Down syndrome.

 
at 3:12 PM, June 22, 2007 Blogger Clayton Hynfield said...

To the anonymous poster asking if Bridget Brown really composed that eloquent and moving message, I can't say for sure, but perhaps the same Bridget Brown with Down syndrome wrote this letter featured in the newsletter of the Family Support Network of Illinois. I have met several young adults with Down syndrome through the Down Syndrome Association of Greater Cincinnati who have been shy but amazingly well-spoken and thoughtful. There is a vast range of physical and mental abilities among those with Down syndrome, and even having a child myself with DS, I am surprised by many I meet.

 
at 3:36 PM, June 22, 2007 Blogger Clayton Hynfield said...

I would urge everyone interested in this issue to remember that ours is not the first society to practice the selective "termination" of people deemed less useful than others. Hundreds of thousands of people with disabilities were killed in Nazi Germany under Action T4, while half a million girls are killed each year in India, simply because they are girls.

And in case you want to believe that the ACOG simply has the best interest of the child with potential disabilities at heart, remember that the current "termination rate after prenatal diagnosis of...Down syndrome" is over 90%.

 
at 3:44 PM, June 22, 2007 Blogger Clayton Hynfield said...

I have a 15-month-old daughter with Down syndrome. She's our fifth child, and as we did with our other kids, we politely refused the midwives' offer of "routine testing". We had no idea until she was born that she was substantially different from our other children.

Yes, my wife and I have spent time grieving, sometimes bitterly, for expectations lost and hopes dashed, for the child we anticipated but didn't get. We conceived little Annamaria after three miscarriages in a row, and after one friend's loss of a son with trisomy-18 and another friend's loss of a daughter with anencephaly. Even after these bittersweet experiences (emphasis mostly on the bitter at the time), we had high, high hopes for what we prayed would be our "take-home baby".

Certainly the first several months were torturous, as Annamaria was nearly unrousably sleepy and had a lazy suck. In her first year she had several colds and even pneumonia once or twice (she's sick right now, in fact). And she, like half of all people with Down syndrome, has congenital heart defects, one of which will likely require surgery this year.

Now, with that said, I can also confidently declare that Annamaria is the light of my life, and that the love that her constant, sweet, and goofy smile engenders in my heart only increases the love that I have to share with my wife and four other children. Yes, just the first year has been difficult, but it has also been so, so much more than worth it. She has transformed our lives and our souls, and everybody she meets is better for having known her.

If we are blessed with any more children, my wife and I have resolved to politely refuse "routine testing" again.

 
at 11:24 AM, June 25, 2007 Anonymous Anonymous said...

I have an eight year old daughter with Down Syndrome and our family would NOT be complete without her! She contributes to our daily life as much as her sisters. She is capable (with extra work and help)of doing ANYTHING her siblings can do.

I am the mother of four daughters and did have the prenatal testing (triple screen)done. At the time it was optional and I chose yes to prepare our family for the possibility of any birth defects. With our first and second children everything was "normal" on the tests. Our second daughter had Down Syndrome and the test did not identify the birth defect! Our third daughter the tests showed a problem and we became concerned. After an amniocentesis, we discovered her due date was wrong and that caused the false positive on the test! With our fourth child I decided NOT to have the tests! I have heard of people who have received a false positive and planned for Down Syndrome to discover at birth that the baby was perfectly healthy and DID NOT have Down Syndrome.

 
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