December 21, 2014

“You Don’t Have to be a Hero”-The Horrible thing my Doctor Said {Down Syndrome Diagnosis}

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Disclaimer: I’m not a working journalist any more and I did not have any kind of recording device during this discussion.  The quotes are what I remember about the conversation I had with my doctor, they are not exact.

My husband has a gift. He can’t remember bad things that happen. So, if I ever try to pull the wife card and bring up an old fight…he has little to no memory of it ever taking place. Lucky guy, right?! I wrote earlier how I on the other hand, remember every little detail when something goes wrong…until recently.

I thought I remembered each horrible minute inside the doctor’s office the day he read us the Harmony results. I remember feeling numb as I waited on top of the exam table with that crinkle paper underneath my legs. I had already experienced the ton of bricks part of that experience; the shock, the tears, the screaming—and so we sat in silence as we waited to get the official word. But part of that office visit was so terrible that I blocked it out for weeks. It was my mom who actually reminded me of the horrible thing my doctor said to us.

Our conversation went something like this: He said, “It’s this time when people normally want to talk about their options.” I said, “What are the options?” He continued, “Option 1 is you terminate the pregnancy.”

Let me stop right here. This is not the terrible thing he said. No matter what my beliefs are on the issue, I think it was his job as a physician to give us this option.

He went on to tell me that since I was 22 weeks I would need to let him know immediately if we wanted to end the pregnancy as time was running out. I asked him “What’s option 2?” He said, “Option 2 is you continue the pregnancy with a high risk doctor.” It was at this point we started asking him more specifics about Down syndrome, we wanted to know what to expect for our child’s short and long- term future.

He told us long term he may never be able to feed himself or the best we could expect was that he could flip burgers at a fast-food chain. This is simply not true. With advances in medical care and therapies, young adults with Down syndrome are able to attend college these days. According to the National Down Syndrome Society there are 108 colleges with programs for young adults with disabilities. Although concerning that this doctor had little to no knowledge on recent advancements in the quality of life of people who have DS, this is also not the horrible thing he said to us.

He went on, “More immediately, you have a higher chance of miscarrying or stillbirth with Down syndrome and your baby has a 50% chance of having a heart defect.” I stopped him, “Wait, there’s a chance I could miscarry this late?” “Oh, yes, you have a much higher chance of miscarrying,” he said it in a reassuring tone…as if this is what I wanted to hear. This still is not the terrible thing he said to us.

“If you decide to continue the pregnancy, you don’t have to be a hero. You can have the baby here. We can keep the baby comfortable, but you don’t have to do anything drastic like open-heart surgery.” There it is. My son. Apparently he should expect the same access to medical care as a family pet. There is no neonatal care unit in Alamogordo, much less any tertiary care that he may require. We could choose to keep him comfortable, warm, but let him die because his life would not be one worth saving.

I decided to write this post because unfortunately this kind of reaction from doctors seems to be pretty common. Through support groups and research I’ve found that many OBGYNs paint a bleak picture for the future of children with Down syndrome despite recent medical and social advances.

Here’s what I find so problematic with how my doctor delivered the news to us. More people are having non-invasive prenatal screenings done (NIPS) like the Harmony test we had. I asked our doctor if we should get an amniocentesis to confirm the results and his response was “ These tests (NIPS) are so accurate that most doctors won’t perform an amnio if you have a positive result.” Therefore, he gave us terminating the pregnancy as option 1 without a diagnosis of an amniocentesis. Some studies have found that NIPS are not as accurate the makers would lead you to believe, one study found they only have about a 50% accuracy rate for younger women. A recent “sting” had two women who were not pregnant take the different NIPS tests, 3 out of the 5 tests said the women were having baby girls who did not have Down syndrome. Clearly, the 99% accuracy rate the tests boast seems skewed. 

Here’s another reason why I find our experience to be so concerning. 1 out of every 691 babies born are born with Down syndrome. Take into consideration how many more people would have Down syndrome if it weren’t for the high termination rate. I’ve read it’s somewhere between 75%-90% for women given a prenatal diagnosis. My point is: Down syndrome is not uncommon. It is the most common genetic disorder out there. Although I wouldn’t expect an OBGYN to know as much about DS as a high-risk OBGYN or a pediatrician, they should know more than my doctor did. They are the ones delivering the news to moms and dads, they should be educated on recent advancements. If they did, I think they would find that a life with Down syndrome is still a life worth living.

So if my former doctor is reading this, I’d like to point him to some proof of that.

Here’s a list of businesses whose owners have DS: http://yomammamamma.blogspot.com/2009/12/businesses-owned-by-people-with-down.html?m=1

Here are education success stories: http://www.ndss.org/My-Great-Story/Virtual-Storybook/Education/

Here are some stories that will restore your faith in humanity: http://www.hlntv.com/article/2013/08/17/downs-syndrome-success-stories

See how easy that was? A simple google search.

If you are a parent and are unhappy about how your diagnosis experience you can submit your story to the Down Syndrome Diagnosis Network and they will send your doctor materials in hopes of educating them on how to deliver news in a way that is supportive and educational. Visit their website here and like them on Facebook here.

Read more posts about our diagnosis story here.

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45 thoughts on ““You Don’t Have to be a Hero”-The Horrible thing my Doctor Said {Down Syndrome Diagnosis}”

  1. I wish I could reach through the computer and give you a hug. I know that’s not what you were looking for by writing this but I absolutely hate that you experienced this in 2014. It seems unconscionable that an OBGYN STILL would deliver such an inaccurate and bleak message to expecting parents. And to actually tell you that you should consider terminating based on the results of a blood test without having an amnio borders on malpractice in my mind. Our kids with DS are SO much more than what that doctor told you. I am so glad that you have found support and can see that even before your little boy comes into the world. It will just be that much more obvious to you when he is in your arms. I am praying for you and thinking about you. Thank you for sharing your story.

    1. Thank you Kristi. I didn’t realize how terrible (don’t get me wrong…I knew they were bad) the things were he said to me until I started doing research myself. It’s really terrifying that my experience is not uncommon. Thank you for reaching out. I look forward to keeping in touch with you!!

    1. Donna, I actually couldn’t tell him “you’re fired” because his practice was the only practice in the tiny town we lived in. I did have to see him one more time and I thought I was going to have a panic attack! I’m so glad I’m not there any more.

  2. Jillian,
    Thank you for sharing this. It touched me very deeply. As a woman who has been unable to conceive because of extreme genetic issues with my eggs, it tears me apart to see lives like these not valued. DS children are some of the most pure humans I’ve ever met and I would be honored to be a mother to one. Thank you for speaking out and giving these sweet children a voice. Prayers for you all for the adventure ahead.

    1. Sarah,thank you for taking the time to read and comment on my little blog. I agree…all lives should be valued. Thank you for your prayers and encouragement.

  3. If one doctor at a time is what it will take, it’s what we will do. Congratulations on the BEST diagnosis. That little boy is going to have an amazing life!

  4. Very well written article-and wishing the best for you and your family. I am a retired RN and in defense of the MD, although he appears uncaring by his blunt comment–he is trying to tell you that if indeed your son has Downs this will not be an easy road–my own brother and SIL have a very involved Downs son who is now in his 30s– he has had multiple health issues, multiple cardiac surgeries and they have the constant worry of “if something happens to us who will care for him” he actually requires institutional care due to behavioral issues that make him dangerous at times–and yet having said that he has also given them so much love and joy—so your MD was probably just trying to tell you this is not going to be easy and some couples can not handle the issues and stress this requires–could he have approached the issue in a better manner—oh yes but some MDs just are not very good at that kind of thing–I love that you have written about this and am sending good thoughts and prayers your way.

  5. I can’t help but laugh at the ignorance of Dr’s. Some of them make me sick. I love my son, he was born 5 years ago with Down Syndrome and is now showing signs of Autism but is a gem in our lives none the less. We love him to pieces. As does anyone who meets him. I applaud all parents who CHOOSE a LIFE FILLED WITH JOY with these amazing children

    1. Thank you for reading our diagnosis story…I agree this kind of ignorance is sickening. I’m so glad you reached out!

  6. I am sorry you came across such a dope of a doctor! I am grateful to have had wonderful doctors during my pregnancy. Only once was the “termination” option even mentioned, and I know that was because she had to. (when we got the test results the genetic counsler asked if we wanted to “talk about termination or adoption” I said no, and that was the last I ever heard of either of those topics!)
    The only thing that did freak me out a bit was when one said, rather casually, “there is a higher rate of fetal demise with DS” yeah, that freaked me out for the rest of the pregnancy! (mind you we already lost one child to STUPID cancer!!)

    1. Leticia, you have a beautiful blog. Thank you for reaching out to me. I really hope you stay in touch!

  7. As the mother of a 27 year old son with Down syndrome and 2 other “typical sons”, I can honestly attest that my son who has Down syndrome has been by far the most delightful son to raise. I love my other 2 very much, but they have been much more difficult to raise. There are no guarantees with any child you give birth to as to whose life will be “easier or better”. My son with Down syndrome, is joyful, caring, kind, attentive, giving, He shows gratitude for the simplest things and his perspective on life, is on a much higher spiritual level than anyone I have ever met. I describe him as the functioning one in our somewhat dysfunctional family. :)
    Blessings to you and your new little one. I wish you much joy and happiness.

  8. I always try to look at both sides of the coin, and give the benefit of the doubt…
    Your Dr. was probably terrified at the thought of how to break the news to you. I’m sure, at some point, he has had some awful experiences at giving bad news.
    It astonishes me that this is not covered in med school. If it is, they need to reevaluate the criteria.

    That being said;
    Is it really bad news? Ok, there is a financial aspect, and probable health issues, but you expect financial drain with any child, and who knows if a non DS child will develop health issues? And of course, people issues. Some people will be unkind, and some are downright cruel. But that is really their own problem. They are that way anyway.
    I think it’s that some couples are just not capable (or think they are not) of mothering a different kind of child. And too many Drs believe this is the thinking pattern of most couples. Many couples, I fear, have terminated their pregnancy, simply due to the fear instilled by an insensitive doctor! I think most people will just deal with the capabilities of whatever child is born to them. You can’t know in advance if your child will be ivy-league bound or a rebellious criminal, headed for the state penitentiary, by a blood test, so perhaps knowing in advance is not the answer? I don’t know.
    It should be required, to have a medical license, some sort of training in compassion.
    Yes, provide the options, but without personal opinion. Cleanly. With simple kindness.
    You seem like kind, and compassionate people, and your son will be a blessing to you. Enjoy every minute with him. They grow up way too fast.

  9. Sadly, we seem to have become a “throw away” society…if someone deems something as “imperfect”, the mentality of some is “throw it away”…I believe that God NEVER makes mistakes! The love and joy you will feel for this new life, and the love and joy this child will bring you, will far outweigh the worries…no child comes into this world without worries or risks…but every single one of them, are a precious gift!

    1. Thank you so much Katie for reaching out and for sharing my post! I hope you stay in touch!

  10. My Kali will be 26 in May. I was almost 18 when she was born. The delivering doctor (not my regular he was out of town due back the next afternoon) told us she was a mongoloid and that we should put her in an institution forget i ever had her and go on with my life that was if she lived through the night because her heart defect was so bad he wouldn’t even let me see her because “it’s better that way so when she passes you won’t have started bonding yet”. Luckily a nurse didn’t agree and after he left took me to see my girl. It hasn’t always been easy, failure to thrive, open heart surgery, t and a, every winter for the first 10 yrs at least a week in the hospital for pneumonia. Now almost 26 yrs later she has 2 younger brothers 24 and 20. 2 nieces she adores and helps with the youngest because we have temp custody. A 3 1/2 yr old cousin and twin cousins that are 14 months old that she gets paid to help with. It was a difficult road at times but worth every bump and snag along the way.

  11. I had a very similar experience when my daughter was born in 1992. I am sorry to hear not much has changed since then. The doctor painted a very bleak picture for me too. He neglected to tell me of the joy and unconditional love that we would experience. No, you didn’t have to be a hero… but thank God you chose to be! You will never be sorry! I promise! God bless you!

    1. Thank you so much Michelle! Your comment brings tears to my eyes. Thank you for reaching out!

  12. I appreciate this post. For me we didn’t know our baby had Down Syndrome. When they discovered it after she was born my doctor was so amazing in telling us all the opportunities that were available to us and wrote Psalm 137:5 on the birth certificate. The pediatrician was sure to give us a list of resources.

    My problem was my mother. She called to say that she was sorry that the baby had Down Syndrome. At first I thought she needed time to adjust but when she’d come around she’d talk to all the other kids but wouldn’t acknowledge the baby. I found out later that she said some pretty rude things about it being a shame I kept the pregnancy. We don’t have any contact with her but I wish that people wouldn’t write of Down Syndrome as an awful life sentence. It’s been the best thing that’s ever happened to my family.

    1. Wendy, I’m so sorry to hear that about your mother. I can’t imagine how devastating that would have been. I hope you have great support elsewhere. Thank you for reaching out Wendy!

  13. I was given the news 2 days after my son was born, by a registrar waving a piece of paper saying “I hate having to do this”….I told him not to worry, he didn’t have to do anything. I scooped up my baby & cried….Not at the diagnosis, but at his attitude. Doctors in the UK were all supposed to have been trained in how to break the news to new parents, the problem is (I assume it’s still the case) in hospitals, junior doctors rotate their jobs every 6 months….No life should be devalued because of an extra chromosome.

    1. Agreed! I’m so sorry that was how the news was delivered to you. Thanks for reaching out, Lyn.

  14. I had a similar experience when it was suspected that my son had T21 after triple blood test came back as 1 in 2 risk. I explained it didnt matter as we wouldnt change anything but the ob still tried to persuade me to have a amino, the reason being there was less of a risk of miscarriage than the baby having DS. I again said no and he informed me of the worse case senario amd how much of a drain it would be on the health service. I left there angry, feeling like the world thought I was a bad mother and giving birth to a monster. I felt so sad for every baby that would have been terminated after these conversations. Yes my Dominic has DS but its a small part of an beautiful and amazing boy who has changed us in so many ways. The future is unknown for all of us but its a brighter one having my boy in it xx Did anyone every stop to think if its the most comman genetic ‘disorder’ then maybe god or nature where ever you stand in your beliefs.. meant our children to be here, whos to say we are not changing the course of mankind by deciding to omit people who do not fit the norm. We have a lot to learn from from t21 and the researchers are just recognising that and that also benefits us and our children.

    1. Wow, I can’t believe your doctor said that. I’m so glad that your son is doing so well. And I agree with your sentiments here!

  15. more people need to open their eyes before they talk. I have a daughter who will be 5 in February with DS and is doing awesome. She is an awesome person and shows more love than most could emagine. My blood test was negative and we didn’t know until she was born. We are very blessed and wouldn’t change her for the world. All our love The Carrahers

    1. I’m so glad to hear how great your daughter is doing! I agree…this doctor should be more educated!

  16. I see your invisible wings – you, Andy, lovely Violet and, of course, beautiful Anderson.
    It may not always be easy…..but your faith, love and hope will conquer. Anderson will hold hold your family together in ways that only hindsight will show.
    Enjoy! Enjoy life and each other and all that comes with it. Blessings always!

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