Tuesday, March 13, 2012

Diagnosis: Down syndrome

This is the sixth in a series about the new tests that detect Down syndrome in the first trimester of pregnancy. It is our hope to bring awareness to concerns regarding these tests, as well as bring a call to action. As always, thoughtful and respectful discussion is encouraged in the comment section.




Dylan

Of all the posts in this series, in my mind this is the most important one.


Because these are your words...these are your personal experiences of how a diagnosis of Down syndrome was presented to you, and to me these are the most powerful argument for what is wrong (or in some cases right!) with the medical profession today.

As parents, receiving a medical diagnosis of Down syndrome can be one of the most life changing moments we face. How that diagnosis is delivered- and the options that are presented - can virtually mean the difference between life and death.

Nathan



It is our concern that the trend in today's medical practice is a push for termination. In some cases this push may be influenced by a doctor's own personal views of a life lived with Down syndrome, as demonstrated in several of the stories in this post. More likely the trend to suggest or pressure to terminate stems from a fear of "wrongful birth" lawsuits, such as the most recent case of Ariel and Deborah Levy vs. Legacy Health System. 



There are no laws stating that a doctor or genetic counselor must present termination as an option following a diagnosis of Down syndrome- contrary to what the women in the following stories were told.

 There are, however, legal precedents, as in the case of the Levvy family, that are clearly influencing the dialogue between between doctors and their patients.



George

Take for instance, the words of Dr. James Delahunty, who was on the losing side of a $1.85 million wrongful birth lawsuit in Somerville, NJ in 1998 involving a baby born with Down syndrome.

"For 40 years, I had a good rapport with my patients," he said. "But now I look at a woman and see a potential lawsuit." He left private practice three years ago and works as a hospital consultant, assisting pregnant women with HIV. He plans to recommend to the American College of Obstetricians and Gynecologists that all prenatal diagnoses be assigned to hospitals' genetics departments rather than to OB/GYNs. This might keep other OB/GYNs from being sued by patients who have genetically flawed children. 


Until that happens, Dr. Delahunty said, OB/GYNs will continue being plagued by wrongful-birth suits in the states where they are permitted. It is not known how many wrongful-birth suits have gone to court nationwide, as they are not monitored by legal associations, pro-life groups or the American Bar Association. "It's difficult to tabulate how many cases are happening, partly because records are kept by individual courts and not consolidated," said Mr. Forsythe, whose organization provides legal counsel to state legislators confronted with abortion legislation. "Once wrongful-birth suits get state approval, they become rather routine."  

While these cases involve a missed diagnosis of Down syndrome, it must weigh heavy on medical practitioners that delivering a diagnosis of Down syndrome without securing a patient's direct verbal rejection of the termination option could cost one's career. 


I want to personally thank every mother who shared her story here, and for giving me permission to condense each one for time's sake. I was just as encouraged by stories of practitioners who offered compassionate and supportive information to their patients as I was dismayed by those who offered none. So many stories were submitted that I am posting Part Two tomorrow, and I hope you'll come back to read that post as well.






Levi




*******************************************



At 11 weeks I had a prenatal test called a nuchal translucency and the results came back with a 1 in 5 chance of having a baby with Down Syndrome.   Our OB automatically assumed that I would want to terminate the pregnancy and asked me when I wanted to schedule the termination.  We told her that we were keeping the baby.  She insisted that we "must" want to terminate given that a child with Down Syndrome would be a burden on us, our family and society.  We found a new OB.


************************


It took 2 or 3 days to get the initial amnio results. The diagnosis was Trisomy 21.

Thanks goodness my husband took the phone call, because the genetic counselor told him our "options". Since, at this point I was about 25 or 26 weeks pregnant, we were told that Denver would be our closest option for termination. To this day, I hate the fact that I even know that. The perinatologist was so depressing and doom and gloom. Constantly focused on what was "wrong", very clinical in everything she did and presented to us. She lost sight of the fact that we were still thrilled to be having a baby and that baby was a part of our family.

After much debate, we realized it would be in our best interest to deliver in a larger hospital and it was starting to look like I was going to have this cold hearted woman deliver my baby. I ended up switching to the midwives at the larger hospital. Still had the security of the access of the NICU, but had two midwives caring for me and my baby and my family. They know how important this child was to our family and that we loved her. They respected me.






**********************************


The doctor immediately got on the phone and said, "Unfortunately, the test did show that your baby has Trisomy 21."
I became hysterical, tried to pull to the side of the road, etc. There was horrible traffic so I was unable to get off the freeway for several more minutes. I asked a question about whether this was 100% for sure. She said, "Melanie, your daughter is going to have Down Syndrome." We didn't know that we were having a girl before that.

She did tell me that she was legally obligated to offer termination to me, and that if we chose to do that we would need to do it soon. I thought she handled that part as sensitively as possible. She didn't push me when I said we wouldn't even consider it.

One nice thing was that she told me I could contact her anytime (she was going to be on call that night at the hospital) and that she had prior patient's information to give me if I wanted it.




**************



When our amnio results came back, I first heard about it from my doctor calling me at the office. Not cool. Very difficult to keep it together at the office. He insisted that we come to his office right away. We did but he didn't really have anything to share. No information, no resources. He had a very blank, unreadable expression. He didn't have a chance to discuss termination since we told him right off that we would not terminate. Not one of the docs in that 5 member practice ever brought up DS or inquired as to our needs on the diagnosis for the rest of the 9 months.


 ****************


We eventually decided to go ahead with the amnio and it was the genetic counselor who called me with the results.  She was very kind and supportive, again encouraging us to contact the DS association and again no mention of termination.

Later I got a call from my midwife after she received a copy of my results.  Her words were so incredibly hopeful and encouraging.   She has been a midwife for over two decades and she told me that a number of “her families” have a child with Down syndrome.  She told me about the joy that those children brought to their parents lives.  She also made sure that I had received the contact information for the DS association.
 
At the time I was completely naive to the fact that most women choose to terminate with a prenatal diagnosis.   When I eventually read the statistics I was shocked and felt completely isolated.  Later on, at my postpartum check-up I mentioned the 90% statistic to my midwife.  She had never heard it before and was also completely shocked.  She said something like “You’d think being in this line of work so long I would know that.”  When I think about it now I bet that in her practice the termination rate is probably not 90%.  The attitude of medical professionals has such an impact on how women perceive the diagnosis.  Being told that my baby would have DS was hard enough.  I can’t imagine what it would have been like to face unsupportive attitudes on top of that. I’m so thankful that my experience was so positive!


Abby

*****************************

 
We ended up having the ultrasound and amnio done on a Friday and they said the FISH results should be ready by Sunday. We came home from an outing Sunday to hear a message on our machine to call a particular doctor at the Maternal fetal medicine center. She responded to our call back very quickly and told us over the phone that Trisoimy 21 was confirmed. She was pretty neutral and asked if we had questions and told us that the genetics counselor would be calling us the next day.

The genetics counselor called Monday - she gave some good advice about doing what we wanted. She said it was okay to take our time and tell others we didn't want to talk about it right now if we didn't. She reinforced that we could be as open or closed as we wanted with others and that it was OK to be blunt if we had to be. She called back right after we hung up and said, "By law I have to ask - I believe you had said you wouldn't consider termination for Ds; is that still the case?" I said that was right and she said "OK - it's a legal thing and I wanted to make sure we would all be on the same page when we get together next week.

My regular OB also called and left me a message saying she had seen the results and just wanted to check in on me. She was quite positive and I appreciated that she took the time to call. She said to call her if I needed to talk or to get referrals from her.

Eli


**********************

  
  I was a high risk pregnancy and throughout it, everything was ok but then during one of my routine ultrasounds, things didn't look right.

I was already 30 weeks.  I opted for the amnio.  One week after that I called for the results with my husband on the other line.  The doctor said "I'm sorry but your son has Down syndrome."  I then said now what?  The doctor then explained to us what needed to happen and got me some information.  Never once did she mention "a way out" of becoming Dale's mommy.  I'm so glad.



*********************

The genetic counselor called me at work to tell me that the result from the amnio was "positive for Down syndrome.". She urged us to visit the perinatologist for more information and then ended the conversation. That was that.

A couple of days later, my husband and I went to visit the perinatologist, who talked at great length about the "burden" that people with Down syndrome are to society and if we weren't going to think of that, well, we should think of our 2 year old son, who would be "saddled for life".

We asked for resources, information. I desperately wanted to connect with families, other mothers of children with Down syndrome. The doctor said he didn't have that information, "I don't do that," was what he said.

He merely urged me to terminate. Told me that it was hopeless and refused to provide me any other information.

Moxie



************************

After the specialists confirmed that there were four cysts on the back of our little girl's neck, we decided to get an amniocentesis. The doctor said that there was a 1 in 2 chance that this baby had either Down syndrome or Turner's syndrome.


When my OB called me to discuss how the amnio went at the high risk center, she ended the phone call by saying "Let's hope for anything BUT Down syndrome"

Later, after the test came back positive for ds, I could barely look at this doctor and was thankful when she didn't end up delivering my baby.

The genetics counselor referred to my pregnancy as "an option" and was extremely depressing when delivering the news. He kept wanting us to come into his office for "counseling" but I refused. I knew he didn't believe in the sanctity of life, and I couldn't handle someone talking about killing my baby so easily.


Addison






*****************************


I had a CVS and all doctors (OB/GYN, genetic counselor, perinatologist, and cardiologist) repeatedly offered termination and when I said that I didn't want to be asked anymore I was told they "have to ask."  It was very upsetting for me,emotionally draining, bad for my state of mind.  I was even asked during delivery "you want us to do everything we can, right?" when the baby was in distress.  Seriously.


******************************


 At 33 weeks...33 WEEKS!!...we sat down with the genetic counselor and she said in one breath, "You can have an amnio, and if anything comes back positive you can terminate the pregnancy." Those were my options presented...no info whatsoever about what ELSE we could do if it were positive. I declined the amnio.
 
Ty


***************************

I had an amnio and it was not a bad experience at all. We were so happy to have a prenatal diagnosis and felt very prepared for Lauren's arrival. The MaterniT21 test became available the month after we got our diagnosis. I would have loved a non-invasive test! We declined all early screens and found out at our anatomy scan and had the amnio on the same day.

Lauren


*****************************


I had an amino at 30wks to rule out Trisomy 18. The doctors wanted to know due to heart defects and to plan for her birth. I was offered an abortion 7 times, even stating that I would need to travel out of state due to how far along the pregnancy was. Not one time were we offered an opportunity to meet with a family or given current information on what we could expect. We never considered any option but to welcome our daughter into our lives. 

****************************** 


 After the level II ultrasound we were told they weren't sure what the problem was, but it was very likely that our baby girl would have serious medical issues and would probably not live to be born, or if she did she would be severely disabled. My husband and I were in complete shock and were heart broken. At the same time they asked if I wanted an amino so they could try to determine exactly what the baby had. I was in no state to be making a decision at that time and told the doctor to do what she thought was best. 

 The hardest part of the amnio was to stop crying long enough to be still. Three days later the doctor called (we are 2 hours away) and said she had Down syndrome. Prior to this, Down syndrome was never even mentioned as a possibility. The news was actually a relief after all the much worse possibilities we were given. The doctor was very positive about the situation and never was termination ever mentioned by any of the staff. I was very thankful for this, as we are completely pro-life. Looking back, I am glad we knew ahead of time, I was able to do a lot of my grieving ahead of time and could research things to expect. 
 

**************


We opted out of having an amnio with Bella because we had one with #3 (her blood work came back wonky) and even before we did the amnio, we felt that the genetics counselor was pushing to terminate if the amnio came back posititve. I really think that was just about the only option she talked about. I was an emotional wreck that day - I was told to leave work and get over to the specialist for the amnio, and then we were hit with the termination talk (it's a lot to absorb!!!)...#3 did not have DS, but I can't imagine the pressure they put on a woman if her test comes back positive (we are in the metropolitan DC area -and this particular practice is rated as one of the top practices in the area). When Bella's blood work came back at 1:130, we told my doctor our position and our prior experience with that office, and he never brought up the amnio again.

Bella

**************************************


I had CVS.  My doctor was great! She gave me the diagnosis during a routine visit.  Thank goodness my husband was there too.  She said the following:

We received the results back from your test.  The baby has Trisomy 21.

That's it.  I probably said something (don't remember) and that's when she said whatever you want to do.  No pressure to terminate at all. I also declined meeting with a geneticist after the diagnosis.  I figured they would just give me gloom and doom stats and I didn't need or want that.

I held it together in the doctor's office, but by the time I walked out and got to the elevator I was a wreck! I think I cried most of the entire day. I barely made it through the next three months.  I was pretty depressed. My doctor though was VERY supportive.  I will always be grateful to her!

 
**********************************


I had an amnio, and I'll never forget that phone call when the genetic counselor gave me the news. She said, "I have news and it's not good. There's no easy way to say this so I'm just going to say it." And she said it. At one point (after telling her termination was not an option) I said "I don't think I can do this." She told me that adoption was an option and there are hundreds of families interested in adopting. At the time I was shocked to hear that. Anyways, I was never once pressured or even offered termination after we told them it wasn't something we'd consider. Later that afternoon my husband and I went in to her office to talk to her more about the diagnosis. At that time she told us the "Welcome to Holland" story (and I was thinking "Holland? Really? Holland sounds nice, but this diagnosis sounds more like a third world country to me" I was NOT in a good place lol) She also gave us a book about babies with DS and the website to get more info on adoption.

 

***********************************


I went to the maternal fetal specialist. He held my hand as he told me during the ultrasound that he thought the baby had Trisomy 18. I asked him several times, are you sure it's not Down syndrome? He said no.

We did the amnio. Also video and ultrasound of her heart. He found 7 defects in her heart. The fetal cardiologist said a mild vsd. Nothing to worry about. We were so happy. A couple of days later, we got the fish results. The genetic counselor called to let us know she had Down syndrome. I remember asking, that's it? NoTrisomy18? We were so relieved.

During our 2nd ultrasound thru our confirmation we were asked a total of 7 times if we wanted to have an abortion. The geneticist asked several times, the maternal fetal doctors both asked, and several doctors in the OB practice. I was mostly annoyed, but after she was born, I was so sad. That's all they thought of my baby. Better off not to be given a chance.


She was born with all the heart defects the maternal fetal doctor confirmed. She only lived 8 days. This was nearly 8 years ago. I still cry about it.

 She was so wanted.


**********************************

We received the news from our perinatologist. With a straight face he told us, "The results came back and the baby does have Down syndrome." He did not put sympathy in his voice, and we appreciate that. It wasn't put as a "negative" thing. Just stating a fact. He told us slowly and carefully. Gave us a minute to absorb the information. He then came with us across the hall where he had already arranged to have a genetic counselor speak with my husband and myself, and the doctor stayed with us in the room. I greatly appreciated the fact that he stayed. He didn't tell us and then shove us off to another person to deal with the issue.

 He answered any questions we had and after we told him that we were not too concerned, because I had a degree in psych and was a former behavior therapist for children with austim, worked in special education and now we both work from home to give our child the full attention he deserved. Our doctor told us, "Well, its seems as though the baby picked you well. "

The genetic counselor also gave us a book on children with DS and gave us handouts on the several parent support groups in the area, and even offered to go with us to one of the meeting. She followed up with us through out the pregnancy and even after to see how we are doing. I can't imagine a better way to have received the news, though it was hard to hear at the time. It was never sad, it was never put as a negative diagnosis.



********************************


I had an amnio at 34 weeks and was called with the results at 36 weeks.  After the genetic counselor told us that the baby has Down syndrome I asked how that would affect the rest of the pregnancy, Specifically I asked if he would be getting an echocardiogram and if I would deliver at a different hospital.  She asked, "So then you are going to continue the pregnancy?"  I said yes, I was shocked because she knew how far along I was; it was mentioned in talking about how I had to be rushed to get the echo done before I went into labor.  My husband brought it up after (he was also on the line) and I said she probably had a script to follow and it was a a mistake.  We went in for my last ultrasound at 36 weeks and the peri told me that there was a clinic that would still terminate "in the event of serious abnormalities." It broke my heart that the medical community seemed to see my son as so defective that termination would be an option at that point.  Isaac was actually born 4 days later, very healthy and was home with me less than a week after that conversation.  The genetic counselor did give us a packet of information but it was mostly just printouts form the NDSS and other websites I had already read.


Isaac






*******************



The doctor came in with a worried look and said "I have your ultrasound results...." 

My smile started to fade, as I could tell that there was something serious going on.  He told me that they had found a cystic hygroma on Mason neck's, a thick nuchal fold, flat feet, and a large heart defect.  He said these defects are most likely in conjunction with a chromosome defect. He kept saying how truly sorry he was that this was happening to us.  (he never once mentioned termination that day)  He said that he had set up an appointment with the high risk Dr. to see us and get a better ultrasound.
A few hours later we met with the specialist. We were taken great care of, everyone was very kind and considerate. They let us cry and feel all the emotions we were feeling.  The doctor confirmed that it looked like Mason had Down syndrome.  He said the only way we would know for sure is with an amnio.  I do remember there being kind of a "rush" for the amnio... since the results take so long...they mentioned getting the results back before the "termination deadline" (22wks in our state) is up.  Nothing else was said about it.  We told them that we wouldn't terminate.

Our amnio was the next day. Everyone in the office was very kind, and our doctor was great.  He was very supportive.  We said we wanted the amnio so we knew for sure, and so we would have time to adjust.    No one mentioned termination.

They gave Mason a 3% chance of survival.

Mason



*****************************




When we went in for our first visit at 10 weeks my doctor asked my husband and I what we would do if we found out our child had any issues, and we both said we would terminate. I am so ashamed to admit that now. She then said she would recommend us getting the first trimester screen. After those results showed an increased risk of 1:26, we decided to wait it out. I am so thankful to have had such a wonderful doctor who never once mentioned termination and in fact gave me so much positive info regarding Down syndrome. At the time I was in such denial I really didn't listen cuz I thought for sure nothing was "wrong". I am also very thankful I never had a diagnosis because I don't know what we would have done. 


I was so ignorant back then and never knew how wonderful and normal my life would be raising a child with DS. 

17 comments:

Lisa said...

I am so thankful for the way we received Finn's diagnosis. My first inkling came from Finn himself. He had slept and slept after his birth, but the afternoon following his birth he finally opened his eyes to look around, and in that moment, I saw it in his face. I pushed the thought away. "No, it can't be," I told myself. "I'm imagining things." My midwife was there doing her first follow-up visit, and she began a pretty thorough examination of Finn - much more thorough, it seemed to me, than she had made of Lilah less than two years before when she had also been born at home. I learned later that my midwife suspected almost as soon as Finn was born that he had Down syndrome, but she wanted us to be able to spend some time with him without something scary getting in the way. As she did this exam, just moments after I saw Ds in his eyes, she pointed to the single crease running across each of his palms and said, "You might want to ask your pediatrician about this." "Why?" I asked. "Sometimes it can indicate certain genetic anomalies," she said gently. "Like what?" I asked, the panic rising in me. But I knew what she was going to say even before the words left her mouth. "Down syndrome," she said.

Within the hour, Finn began spitting up blood, a symptom of the duodenal atresia we didn't realize he had, and we had to rush him to the ER. He would be admitted to the hospital and undergo corrective surgery the following day, and spend nearly two weeks in the NICU. It was during that time that his Down syndrome was confirmed by blood test. It was not easy news to digest, but it was delivered to us gently and compassionately, and not a single person at that hospital painted a bleak picture of what his life might look like. Everybody was encouraging. Everybody told us, "Just wait and see. He'll show you what he can do."

Elizabeth said...

I love the stories of hope and triumph. But I am positively HORRIFIED by some of the medical professionals that have been portrayed here. How awful for these parents.

Crystal said...

Love all these stories! Keep them coming!

nicole said...

Wow ~ doctors sure play a crucial role in whether a baby lives or dies.

All the pictures are beautiful. That sweetheart all in pink with is beyond adorable!

Mom24 said...

This is my favorite post and it made me cry. Thank you. What special people are the doctors and genetists out there who handle this with grace. I still remember the specialist who was so angry with me for refusing an amnio..."I can't guarantee you a healthy baby", he ranted. You can't guarantee me a healthy baby even with an amnio, I knew.

Mrs. K said...

This time I read along with looking at the pictures instead of looking at the pictures first. OMGoodness, what perfect pictures, once again, of Angels. God's handiwork personified.

Team Lando said...

Love it... here's a part of my story:

I opted to have the CVS procedure. I hate needles. I cried, and Matt held my hand. Matt brought me home and got me settled. I spent the rest of that day and the next in bed. The following day, I went to work. The genetic counselor had stated that she'd call around four. I was getting off the freeway when she called, and she waited until I was home to deliver the results.

"Your baby does have Down syndrome."

One sentence. Confirmation of what I think I already knew in my heart. Through tears, I asked the gender. We'd already picked names. "Cling to each other," the counselor said.

I am SOOOO glad we had a good genetic counselor who respected our decision and our baby!

TheFoleyFive said...

wow. just wow. It was almost hard to breathe reading these...what was shocking for me was that people are offered a termination as late as 33 weeks?! We have some friends here who pastor, and their triplets were all born at 25 WEEKS and survived! What in the world would they do to a 33 week old baby who is clearly viable?! How awful and disgusting. What heroes you moms all are. seriously, to be hit with those sort of horrifying questions and to persevere despite so many odds and judgments. hats off to you...I could not possibly respect you more.

Shannon said...

What a great thing you have here Patti. I hope this gets to the right people

Anonymous said...

I am rabidly pro-choice and even I think an abortion at 33 weeks is wrong. My husband wasborn healthy at 32 weeks.

cara said...

WOW!! Thank you for sharing this side of it Patti. Obviously there needs to be changes in the medical community and positive information put out there. I can hardly read about the possibility of terminating these precious lives (like they are trash or something).

I am SO thankful that I went to a godly midwife while pregnant with Benji. I never got tested, and we did not know. He was born in a beautiful, peaceful environment at home. And when she suspected that he may have down syndrome, she called him a gift. What a blessing.

But I did find in our situation that there was no good information given to me with the pediatric side of things.

Thank you Patti for all you do.

Looking Up said...

Thank you for sharing Patti. I too, had a negative experience when I learned prenatally that my son Josh would be born with DS & a complete AV canal defect. I was told over the phone by the MD, "Sorry to tell you this,but your baby has Down syndrome. Now you & your husband have to figure out what you are going to do." I said, "what do you mean...whether or not to terminate? We don't plan to terminate" She said, "That's up to you....Again, I'm sorry". And that was it. No referrals to counselors, support groups, no info about down syndrome whatsoever. The funny thing is, since my son was born 3 yrs ago & people have gotten to know what an amazing, bright, happy, healthy kid he is, 5 of my friends have declined to have any of the prenatal tests for DS during their pregnancies. They have told me that Josh has made them see that having a kid with DS can be such a blessing. I truly believe that if every expectant parent could just meet a child who had DS before they made any decisions, that the termination rate for prenatal diagnosis of DS would be closer to 0 rather than 90%.

Lori said...

I am not sure if you remember when I had the 3D ultrasound of the twins for the first time...the tech was very quiet and wouldn't mention too much beyond the fact that they were both boys...then the doc came in and told me that Reagan (baby B) had several issues - he was much smaller than baby A, had shorter leg and arm bones, spots on his kidneys and heart, and a single vessel chord. After she layed out the issues and informed me of the possible complications, she told me it was very easy to terminate the one baby and still have a healthy second baby...Ds was never even mentioned. This doctor thought terminating Reagan's life had to be considered an option because there were too many things stacked against him. I never saw that doctor - or anyone in that office - again. Reagan was born very early and had a challenging beginning, but he is a completely healthy 5 year old boy now. Right now, this testing appears to focus on babies diagnosed with DS, but it will most definately begin to include babies with any type of issues in utero (as stated in one of the previous posts).

Kelly Marin said...

I wanted to weep when I saw those beautiful pictures of all those beautiful kids and to think that "Professionals" would advise termination of pregnancy. How God must grieve.... I Have a friend who was repeatedly advised to have the test done to see if her little girl had down syndrome, just because she was close to 40. She said it got so bad she had to tell them to back off because it didn't matter to her whether her child did or did not have down syndrome.

Barbara said...

Beautifully poignant and timely, Andi. Thank you.

Another source of encouragement is the book I mentioned in this past post:
http://www.therextras.com/therextras/2010/01/who-defines-your-life.html

Laraba said...

I really appreciate these blog posts. Thank you!
I'm 42 and 7 months pregnant with our 8th child. We declined all screening tests and I am so thankful for an OB (with her own special needs child) who has not pressured us AT ALL. We decided against the screening tests because if a test came back indicating we were at high risk for DS (or something else) I know it would worry us tremendously, and I'm not comfortable with the amnio option. You didn't mention this...isn't it true that amnios have a 1 to 2% chance of causing a miscarriage? I am not attacking anyone who goes that route...just feel for us it isn't worth the danger. I'm reading up on DS just in case since I am an older mom...though the ultrasound showed no markers. I do sometimes get scared at the thought, but reading stories about delightful DS children gives me such peace that regardless, our child is a blessing.

Rachel Douglas said...

I am so emotional reading these stories. 15 years in this amazing journey, I would like to ask of we are mad at the right people? IDK. But, whose fault is it the Doctors and counselors have this perception of doom for a person with Ds? Next time your organization asks for money and gives a big portIon of that money to another national organization, check to see how your money is being spent. Don't we need more of our resources being spent on value of life for all individuals? They can do this in a non partisan way with equal respect for all. Why does the general population have an opinion of people with Down syndrome that quite honestly has not changed that much in the past 15 years that I can speak of? Aren't the doctors just people too? Don't they have the same perception as the general public? Is it our ultimate responsibility to educate our little circle of the world? Couldn't we ask our advocacy groups to do more? It is easy for us to be angry at Doctors but not at those who are supposed to be on our side. It isn't one or the other - it is both. We can ask for more, even from within our camp. Lives depend on it.