Sunday, 10 January 2010

To terminate or not?

Well I'm guessing this could be the post that evokes the most responses so far, because wherever people sit on this question, they tend to feel very strongly and passionately about it and I've found that it can evoke very strong one-sided responses even from some of the most open-minded people - but here goes anyway.

Yesterday in the Guardian there was an article entitled To us, she was Emily about a couple who chose termination after tests showed their baby had Down's syndrome and how that  decision gradually tore their family apart.  It was a very honest piece from a viewpoint not often represented and for me it reinforced some of the concerns that I have over this issue.

In my work with Down's Heart Group I have spoken to many families facing this difficult decision and as a representative of the charity I am expected to be factual and non-judgemental and not to allow my own personal feelings to enter into the conversation.  I hope that after all these years I have perfected this, so I am not going to behave any differently here on my blog.   I'm not going to point out all the positive sides to having someone with Down's Syndrome in your life as reading through some of my previous posts should provide that information for anyone that needs it.  What I am going to do is discuss some of my concerns over the way some families are arriving at the decision to terminate.

First and foremost I believe that this is a very personal decision and one that should be made based on individual circumstances.  People have different moral and religious beliefs, come from different cultural backgrounds, have differing family set-ups and varying degrees of support available to them, so naturally the decisions they make will vary, so I find it somewhat concerning that such a high percentage all choose the same option, which makes me wonder on what they are basing that decision?

This needs to be a FULLY INFORMED decision, taking into account all the factors I mentioned before and realistic unbiased information about Down's Syndrome.  This information needs to be made readily available and to be based on pure fact with no implied expectation of the route the family will choose to take and it should include help in meeting families who have a child with Down's Syndrome, support group contacts  and also offer alternative choices such as adoption.

Sadly, in my experience this is all too often not the case.  Termination is the expected outcome; the possible medical problems of the baby are given high precedence; adoption is never mentioned even when a family is obviously in turmoil over the decision; focus is given to the child's lack of future potential even though as with any baby there is no way of knowing what that will be; the option of "throw this one away and have another go" is readily offered.  

Generally, termination seems to be offered as an easy way out and that worries me greatly.  It worries me because I know of families who have gone down that route, steered along by the medical experts and then been left to pick up the pieces when they slater tart questioning whether they made the right choice.  Families who have been unable to conceive again and ended up childless and one family who terminated, refused testing in the next pregnancy as they didn't want to face all the pressure again and went on to have their second child with Down's Syndrome.  They were devastated, not by that baby having Down's Syndrome but by guilt over what they had done before.

I'm certain that many parents who opt for abortion are left with very raw emotions from their experience (yes some of you may feel that they deserve to, but I would ask did they really know and understand that that might happen?) and I wonder what the long term effect on their mental health may be?  

I am sure that not all of them walk away unscathed and never look back.  I can't count how many times the family of a young child has told me that suddenly there are loads of people with Down's Syndrome in their area, but of course really those people were always there it's just that now these families are far more aware and tuned into the characteristics so they notice them.   I suspect that for many of those parents who have a termination it is much the same and that everywhere they go they see people with Down's Syndrome who are a constant reminder of the choice they made and I guess that's not always an easy thing to live with.

In October 2009 the British Medical Journal published a reseach paper Trends in Down’s syndrome live births and antenatal diagnoses in England and Wales from 1989 to 2008: analysis of data from the National Down Syndrome Cytogenetic Register.  One of its conclusions is "These future changes need to be closely monitored to ensure that appropriate resources are available both for the potentially increasing numbers of therapeutic abortions and also for the babies who will still be born with Down’s syndrome."  Whilst we are worrying about the cost of future medical and educational requirements, I'd like to suggest that some research be done on the psychological costs for the families who later regret following the advice of the experts at a time when they were too vulnerable to demand adequate information to make a fully informed choice for the future.

Families given a diagnosis of Down’s Syndrome, whether before or after the baby’s birth are incredibly vulnerable, the onus should be on ALL medical professionals to ensure that they receive up to date, accurate, realistic and unbiased information so that they are in a position to make INFORMED CHOICES.  Thankfully some medics are excellent at this, but I fear that they are still outnumbered by the others.


  1. In the United States, the Kennedy-Brownback bill was passed into law. It states that doctors have to give updated information regarding a diagnosis of Down syndrome, resources available locally, state and federally. It also states that doctors have to mention adoption. I don't know how well it has gone into effect.

  2. Hey Penny, My husband and myself was in our 40's when we got pregnant. They wanted all kind of tests done to find out if the baby would have a birth defect of any kind. We told them we didnt want tests because either way we would be keeping our baby. Our son was born Nov. 7th, 2002 and he was born with down syndrome, leukemia and other health issues, i say issues because they are not problems to us and never have been. He is 7 years old didnt walk until he was 2, we home school him due to the fact he doesnt communicate that well. The therapist that comes to work with him said he has learned more by being at home then he would have if he was at school.
    Not once have we had any regrets with our decision on keeping our son. He has brought so much love, fun and learning to us that it's really hard to explain.
    I understand about not having the resources you need when you have a child with down syndrome. No one could give us information about down syndrome. Our son's nurse called me one day saying the doctor's told her daughter she was going to have a child with down syndrome and wanted to know if she could give her daughter our phone number because he knew if anyone could answer the questions her daughter might have it would be me. She said I know you didn't have resources and everything you know you learned on your own and that is why I thought it would be a good idea for her to talk to you. I told her I would not mind that at all.
    To me if you dont want a child with down syndrome let someone adopt that child. There are more people then not willing to take a child with down syndrome. Those who will be willing to do what they have to, to make sure that child is taken care of, it's not easy at times I know that first hand because our son has 7 doctors he's had 5 surgeries and has had 3 blood transfusions. But you know to us nothing compares to the love and understanding and kindness of a child with down syndrome.

  3. Thanks for this post, Penny!

    I have a 4 year-old son with Down syndrome, and a 6 year-old daughter with peanut allergy.

    I will tell you honestly that peanut allergy is more life-altering, more frightening, and more get-me-down-on-my-knees-in-tears than Down syndrome.

    My son with Down syndrome, Mason, is the youngest of 4 children. Having 3 older, non-Downs children makes me fairly confident that I'm being truthful when I say that there's not as big a difference as society--and the preponderance of the medical community---would have us believe.

    When I found out prenatally, of course I was scared. Scared and sick and angry and sad. But in a few short months I realized that all of the horrible things society said would happen...well, they weren't happening.

    And now, 4 years down the road, those terrible things still haven't materialized. Far from being this awful tragedy, Down syndrome has turned out to be this quite amazing experience. I'm no martyr---it's just not that hard.

    I think most families choose abortion from a place of fear---fear that they aren't 'prepared' for a child with special needs, fear that they won't be able to handle it.

    Parenthood isn't for the prepared: it's for the willing. There are myriad conditions that can pop op post-birth. There are accidents, diseases, complications. There are children who are generally surly and malcontent; depressed; suicidal.

    To be a parent---to bring a child into the world at all---is to say "Bring it on." It is to recognize that there are no guarantees, and to do it anyway. It is to admit that you are not in control. It is to accept the fact that from the minute you take a baby home from the hospital, the worrying begins---SOMETHING could happen---to accept that fact, and to go forth in courage and in love.

    If someone is looking to minimize risk, let me suggest a parakeet. Parenting---of any child---is not for the faint of heart.

  4. I agree with you compleatly Penny I have been very forunate in having being brought up with a brother with special needs, inturn i know lots of people with special needs of varying degrees, so when I had my son Darragh two years ago and we were told he had downs syndrome, we were naturally surprised but not upset as we were well imformed and know many people with down syndrome however not everyone is as fortunate as I, and have no knowledge of how special and inspiring a person who has down syndrome can be. It is sad that they make a decision on cold facts from a person who probably has no practical experience of living with someone with special needs and what the positives are. My husband and I have 5 children when you have a child none of us knows what the holds future regardless of weather or not your child has downs syndrome, so we always say that at least we know one of our kids is going to ture out alright as i have never met a person who has down syndrome who is nasty or bad.

  5. Penny- thank you for your information. It is so helpful and your efforts are greatly appreciated. We found out that our daughter had Duodenal Artresia @ 22 weeks gestation. As this is a possible marker for DS, we opted to have the amnio.The amnio came back positive the week of Thanksgiving. First bit of info we got from neonatologist was that we could go to California and they could terminate as long as her head was under a certain size. A sticky note was given to me w\ a phone number to the local DS org. Nothing positive at all.We cried.We were so scared. But i had previously worked w\disabled adults and new how wonderful my experience was. We accepted our daughter and researched on the net. She came 8 weeks later. has had many serious medical issues...some caused by DS some caused by being a preemie and some by a medical error in her care. but I would not change one thing about her. We love our daughter and she has made such an impact on so many peoples lives. Sometimes we are out in public and I will get the meanest stares from other "women"... that I usually would not expect. As we have done nothing to warrant them. But then I think that during our travels...we are bound to see others who had been in the same boat we were in four years ago...but that made a different choice than us...and I know that seeing a family loving a child as much as we love her must hurt them to the very core of their soul. I pray for them. But a day does not go by that I don't get stopped and people talk about how beautiful she is or I will here about stories from their past of someone that they know w\ DS. My life was missing something before I had her. Now it is complete. There are so many worse things out there in this world. With the way medical technology is progressing..could u imagine if they had prenatal diagnosis testing for autism? That is such a scary thought. I hope that blogs like this help others make an informed choice as well as a choice that they can morally live with in their heart...for the rest of their lives.

  6. Mandy Elderfield11 January 2010 at 04:19

    Hi Penny,
    Great blog. I too believe that people should be more informed with facts before they can make a decision that will alter their lives.
    This is not something I talk about often, but believe it's necessary to discuss, especially when it may help someone.
    I had an abortion years ago. It took me many years to get to a place where I could find the path of recovery. Though I don't think I will ever fully recover, I am heading in the right direction. Having faith has helped me & some may find it weird that coming to terms with the fact that I 'murdered' my child has helped me to find some healing & be able to move on.
    I have 3 children. My daughter is 2 & has Down Syndrome. We decided at the beginning of my pregnancy that we didn't want any intrusive testing. I had my blood tested, for the reason that there is a history of Spina Bifida in my family & if my baby were to have it, then I wanted to be as prepared & informed as I could be so I could help my child give them the best life possible. All tests came back low risk, & our baby girl kept her beautiful secret from us until she was born. Grace has been nothing other than a blessing to my whole family. Her big brothers love her very much & I'm glad that I didn't know that Grace had Down Syndrome before she was born, because we enjoyed looking forward to the birth of our baby & it wasn't added to in a negative way by people trying to tell me to kill her. We were keeping our baby no matter what & I know from experience that in no way, was abortion an option for us.
    I think now that my information & feelings on the whole abortion are valid as I have lived it.
    Please feel free to use my story in any way of you think it may help someone.

  7. Mandy,

    Thank you for being brave enough to speak out about having had a termination in the past, I think it is very helpful and sadly too few people do it.

    I understand that it must be something that they want to move on from and probably those like yourself who have lived with the regret etc. don't want to speak about it, but it is only from a few being brave enough that others can get a real picture of what they may feel after taking that decision.

    I also appreciate why you had testing with your family history - I had testing with my younger two after we lost Daniel. In honesty I cannot say what we would have done with a positive result as I don't think you really know until you are placed in that situation. What I can say with certainty was that after what we went through in Daniel's short life I needed to have that information.

    There was no expectation from my consultant that I would act upon it and I am certain that my decision would have been based far more on identified medical problems that on Down's Syndrome alone, for me they were a far greater issue.

  8. As I lay on the examine table,21 weeks along,a diagnosis of AV Canal Complete and an absolute conviction from the doctor that my child did indeed have Down syndrome,I was asked:"What would you like to do?There is only a small window of time here to decide."I was shocked and saddened and only knew one thing.We were going to keep our precious baby with her beating heart and her tiny flailing arms and legs.No question about it.No discussion needed.

    We were not given any information,just the option of termination.Sad for me to think of countless other mother's and father's that lay on that table,past and future,that were not informed.

    Zoey was indeed born with Down syndrome,major cardiac defect,transient leukemia,a stroke in-utero,seizures and has just finished treatment for AML ... full blown leukemia.

    She is our miracle.Or saving grace.Our perspective in this dark world.She is our guide and our light for all of our tomorrows.

    I would choose no other road today,then the road we chose over 3 years ago.Even with all the extra unknown's that came with our journey thus far.Those twists and turns have made us all who we are today.Zoey's presence in our lives solidifies all the good we know exists and her courage,resiliency and will to survive give us strength for all of our days.

  9. Well, I know why I found or re-found this blog this week!! I need this article for my OB/gyn appointment coming up here.

    Thank you all so much for these comments too. Penny this article you posted last Jan. changed me forever and solidified my heart's tugging. I did not ever see this blog post but the article is a huge part of why I worship your every thought you share based on this life changing read I had.

    Your reply to the comment made here about the perspective on abortion is really important too. I have since read blog posts about the heartache of all sides of adoption too, there are no easy answers but being BRAVE enough to share your intimately personal experience in any detail at all is life altering for people on the path. Or people helping forge the way of rules and how exactly to enact the INFORMED CHOICE aspect.

    I must add that informed choice is perfect. Or PRO-information.

    This family disintegrating story and kill your baby comment here are precisely why I did not get an amnio. The debate in the NY Times this past fall had mecagain in turmoil but I believe if this article about tracking your baby's body was recirculated with those other two that many a few less of the I'd do it folks would be so brave.

    Or I pray for all our souls that my last statement is true.


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