Questioning reasons for giving up baby with Down syndrome

Yesterday I saw a post on a Jewish women’s board that a healthy baby boy with T21 was available for fostering.  I said if he was in Israel we would be willing to take him, but it turned out that he’s in Brooklyn, NY so another lucky family will get the privilege of raising him.

I wish people were given accurate information and support after the birth of a child with T21; it would make such a huge difference in the decisions that are made about their futures before they’ve hardly made it into the world.  I understand people being afraid of the unknown and overwhelmed at what they think is going to be involved in raising a child with T21.  Feelings aren’t facts and fear is a very powerful motivator.  Unfortunately the difficulties in raising a child with Down syndrome is in most cases dramatically overstated.  I’m not going to blithely tell you that there are no challenges – but every biological and foster parent I’ve spoken to with a child with T21 has said the reality was much better than they had been led to believe.

My anguish over the post that I read wasn’t over the need for a foster family.  Sometimes people are overwhelmed and don’t have the resources to meet a child’s needs.  What made me really sad were the comments following the post with the request for a foster family.  This was a board of religious Jewish women, and the overwhelming sentiment I came away with was that giving your child up because of a disability like this is understandable.  What difficulties do they think are involved in raising a child with Down syndrome?

Yirmiyahu, 1 year

Yirmiyahu, 1 year

In this case, the baby was healthy.  In about half the babies born, there are heart problems.  Ten percent of babies have transient leukemia (Yirmiyahu was one of these), which means there are highly elevated white blood cells at birth and is treated with antibiotics.  Fortunately, we live in a time in which heart problems like these are able to be taken care of surgically.  Yes, it’s hard to have a child who undergoes surgery or needs to be taken regularly to medical specialists.  Many babies who don’t have Down syndrome have medical issues that include needing heart surgery- but I don’t see parents being advised to give them up for other families to raise.

People point to medical issues when they say that it’s so hard to raise a child with Down syndrome (I’ve seen this a LOT on a support board for those who have aborted babies with T21 – less than 10% of babies with this diagnosis get a chance at life).  In my opinion, this is a straw man.  It’s an acceptable reason for giving up a child though the medical issues aren’t really the problem.  If they were, you’d see people commonly giving up babies with medical issues, but you don’t, even when the issues are much more serious than what children with T21 may face.   Giving this reason keeps us from looking a little deeper and a little harder at our beliefs about parenting, the purpose of life and our roles as  human beings in this world.

Our family summer 2013 050

1) We’re afraid to be different.  We’ve been conditioned to think that if everyone else is doing something/has something, we want to do or have something similar. We want to fit in. We want to be socially comfortable and we think that means being just like the people around us.   We don’t want a child who looks or acts differently than most of the kids on the playground because of our desire to fit in.  We want a child who will make us proud in ways that are typically assumed to be valuable or at least not cause people to look at us differently.  As a speaker known for her depth and insight once said, there are three main factors in every decision we make: what will others say, what will others say, and what will others say.

So we have to ask ourselves: does a meaningful and impactful life comes from trying to blend in and be like everyone else?  What kind of life do you want to have?  A life that matters or a life of following the crowd, blocking out your inner voice and ignoring your potential to impact the world in your unique way?  If we want to live a life we love, we’ve got to stop being afraid of what everyone else says and thinks.  As I tell my kids, people don’t think about you nearly as much as you think – they’re too busy thinking about themselves.

2) We’re afraid to have difficulties.  In our generation we expect life to be smooth and when there are bumps we feel we’ve been ‘unfaired’ against.  Life really isn’t like that.  Life is filled with daily difficulties, small and large.  We’re meant to be challenged so that we can grow and develop our inherent potential that would remain latent if we were untested.  It’s not always pleasant but it’s good.  Hard and good aren’t mutually exclusive.

3) What is your role as a parent?  Is it to nurture to the best of your ability the child that is born to you, to help him actualize the seed of potential inside of him?  Is it to bask in the approval of others or turn him into a nachas machine?  If it’s to nurture him and love him for who he is, then parenting a child with T21 is pretty much the same as raising any other child.  Every child will require you to stretch yourself to find ways to meet their unique needs.

Our family summer 2013 051

Some needs truly demand a lot more time and energy than others, and parents really need more resources than they have.  However, I believe that if parents were given a more accurate picture of the reality of living with Down syndrome in addition to letting go of some limiting beliefs, we would see requests like the above seeking a home for an infant with T21 dramatically drop.

Avivah

29 thoughts on “Questioning reasons for giving up baby with Down syndrome

  1. A truly inspiring post that really resonates for me, albeit with completely different issues. Thanks for your insight!

  2. I too found your post inspiring. Unfortunately those who need that chizuk will not read it. Perhaps overwhelmed parents who cannot fathom what a T21 child will be like won’t give that child what he or she needs. In that case, it is not ours to judge their decision, but to hope that the child will be raised by a family who will stretch to give them the love and care they deserve.

  3. Dina’s comment resonated with me. I was thinking that your points about thinking deeply about what you are doing, why you are doing it and how you are doing it (my paraphrasing) is something that most people DO NOT wish to do. How many inquiry phone calls about homeschooling have I taken over the years? and how often have I said, well, who are you, where are you at? what’s your child about? what do you want for him? etc etc. and people’s response? Just tell me what I need to DO, tell me what curriculum to buy. Ahem, helloooooo, your child is the curriculum. OH. click. hang up. Same stuff, same dynamic, different issue. People really do not want to have to think and feel and choose. Unfortunate dynamic.

  4. I hope you post your blog on the website where you saw the information about fostering the special child. You have such wonderful wisdom and insight to share!

  5. Can you please share the info about the boy who needs a Foster/adoption, if he still needs one? I would like to share it.

    1. I don’t have specifics on this, but since they felt comfortable turning down an excellent home in a different state yesterday, I’m hoping they had enough responses and will find a great local family.

  6. I’ll be honest, despite reading your blog and being repeatedly inspired by you, if I found out while pregnant that my child had t21, i would probably get a heter to abort, and if the child was born with it, i very well may give it up.
    There is one reason that you didn’t touch on, that would be my main reason. I am very overwhelmed by a lot in life, I don’t have infinite patience or resources, and I have other kids. I can parent a “normal child” but if I had a child with extreme medical issues known from birth, or in utero, I would probably abort, and if the kid was born that way, i would probably give up for adoption, because I simply do not have the mental energy or physical energy to take care of such a child, and I can’t make all my other kids suffer because i have to put all my attention into an extremely high needs child. I wouldn’t give up a kid once I already was raising them, because by that point, I would be too attached to the child, as would my other children, and it would be too hard emotionally, but that doesn’t mean I or my children won’t suffer every day for it…
    In my case, its no stigma against DS, its an inability to take care of a super high needs child, and i pray every day to God that he doesn’t give me such a child, because I know I can’t handle it.

    Another factor is that when you have other kids, you raise them until they’re 18 or 20, etc… and then they “grow up” and you’re done taking care of them, and they end up taking care of you when you and they are older, but with high needs children, including ds, you have to parent until your dying day, they never fully “grow up” and that is an extra challenge that most people aren’t up to.

    I find this post of yours to be judgmental of people like myself, and people who made the difficult choice to either abort or give up a child with DS, especially because of the assumptions that people give up special needs kids because they care about keeping up with the joneses. Chas veshalom. Or because I was looking for the easy road in life.

    Its not. Its because people are aware of themselves and their strengths and weaknesses and abilities, and in my opinion, better give up a child so that someone with more energy and abilities can raise the child, than raise the child and do a terrible job both with the disabled kid and your others, because you don’t have the ability to parent them.

    1. Please choose a name to post under in the future – obviously I won’t know who you are since you created a fake email address. I don’t want to delete your comments but I will in the future if there are other comments left anonymously. This isn’t imamother and it bothers me when people aren’t willing to put even a fake name behind their thoughts.

      As far as your comments, there’s a lot to respond to. I appreciate your honesty and am glad to have the opportunity to share more thoughts on this important topic. Maybe in another post or maybe other readers will want to share thoughts here.

    2. I also am tremendously thankful that my children are not dealing with an major medical issues.

      Aviva’s post resonated hugely with me. I believe that most decisions made about T21 are made in deep ignorance of the true levels of burden and blessing that such a child brings.

      I say this as someone who is passionate about the right to terminate a pregnancy for _any_ reason at all. I will not judge as evil someone who makes the educated choice that they could not parent someone with T21.

      However I will be strident that such a choice is not made in ignorance, and a huge amount of ignorance abounds. Anonymous above said, among other things: “but with high needs children, including ds, you have to parent until your dying day, they never fully “grow up” and that is an extra challenge that most people aren’t up to.” This is a patently _false_ belief. _Some_ children with T21 never ‘grow up’, but the reality is that most are capable of becoming independent adults. They may take longer; they may not be surgeons and Nobel Laureates, but by and large they can learn to take care of themselves.

      The fact that _some_ children with T21 will not ‘grow up’ is something of a strawman…_some_ children don’t grow up, without any sort of diagnosis. I went to Princeton, surrounded by the cream of ‘gifted’ children. In my immediate circle I know of one suicide, one person incapable of holding a job living with his mother, and a huge number of people who have achieved far less than their ‘promise’. Every parent/child relationship comes with the risk of failure.

      The reality is that people with T21 are people who have a greater risk of a range of illnesses, almost all of which are treatable. The people who I know with T21 are not the ‘sharpest tools in the shed’, but they are far more intelligent than usually given credit. There is more work involved in raising a child with T21, but not so much as to make a parent of such a child some sort of superhero. The blessing that a child with T21 gives is no more and no less than that which any child gives their parents.

      The reason that I am strident about this the very same ignorance of the reality actually creates a reality of lowered expectations. Here is a clue: if you decide that your child will not ‘grow up’, then your expectations will keep your child down. The same ignorance and low expectations which lead parents to terminate or adopt out their own children bring down the expectations placed children who are kept. This very same ignorance harms _my_ child.

      It is not a coincidence that in school districts where much is expected of children of T21, they go on to graduate highschool with normal diplomas.

      My son has T21. The worst thing that has happened in the year since his birth was getting the karyotype results. It was as if all of the things that could go wrong in parenting were preloaded in that test result, all my fears concentrated into a few weeks. Blessedly, thankfully, he has had no major medical issues.

      He is growing, and learning, each and every day. He is doing the fairly typical thing of being advanced in some areas and behind in others. He sits up, he rolls over, he babbles, he plays with toys. He likes jumping in his jumper swing and jumping in my arms. He grabs his sister’s hair and makes her scream, and he grabs books out of my hand. He eats complex foods, drinks with a straw, signed his first consistent word at 10.5 months, and at 11.5 months has 4 or 5 signs that he is working on.

      As I said, I will not judge you for the choice that you make, but I will demand that you make it fully apprised of the reality of the ‘burden’ and the blessing.

    3. I totally agree when i had my scan at 18 weeks they found cysts on his brain and im very scared he may be born with ds if he is i will not be able to keep him. I’m so worried about this and i will until he comes out in 4 weeks and i see him with my own eyes this has made me not be able to enjoy my pregnancy when this should be a special time having my first son, i saw a very old lady today on the train with her older down syndrome son and i really don’t want this to happen to me i pray that he comes out like my other two daughters. If this makes me sound like a monster well i must be but i cant help the way i feel. I will always think about him and feel bad but i wont keep him.

      1. Alisha, you sound very frightened. It’s so hard to deal with the unknown. The uncertainty, the wondering and not knowing can be debilitating.

        I hope you find peace and that your little one born healthy and finds a place in your family. I hope that if he isn’t born as you hope, that you can find it in yourself to consider that he might enhance your life in beautiful ways you can’t begin to imagine. Children with Down syndrome are a precious gift, just like any other child. It’s a shame to pass them to someone else just because the wrapping paper looks different because then you miss out on the treasure inside.

        Children with Down syndrome can do so much more than people think. They can read, write, graduate high school and even college. They can excel in athletics, they have their own businesses. None of this is what makes them worthwhile. Who they are is what makes them valuable, but that’s hard to see in the beginning when you are overwhelmed by the messages in the outside world telling you that a child who is different is a child who will make your life terrible.

        If you’d like me to connect you to some amazing Aussie moms raising kids with DS so you can talk and get some encouragement about what’s it’s really like, please contact me directly at avivahwerner@yahoo.com

  7. I want to add an amendment to my previous post and say that I think you are an amazing parent and you are doing wonderful things for all your children, and yirmiyahu couldn’t be in better hands. The thing is that not every parent is as capable and understanding as you, and Hashem knew what He was doing by giving you a child with DS, because He knew you would be able to raise him with love and joy. But please don’t judge other parents for not having the koach and wonderful attitude and endless patience that you have.

  8. Anon, you’ve mentioned HaShem several times. Don’t you believe that a G-d worth praying to knows you and your family and wants to be kind to you? Admittedly my experience us limited, but I’ve never heard family members from such a family speak in less than loving terms of their experience in being gifted with such a higher needs child. I’ve repeatedly heard about children that are loving and joyful, about parents and siblings who are stretched to new capacity of giving.
    Don’t get me wrong. I completely understand the feeling of being overwhelmed and fearing that I’m not going to succeed as a parent. I see my flaws and how they play out in my children and it pains me. But then I try to figure who the person is that would love my children more and try harder on their behalf, understand them better. I realize that every parent has challenges. I try hard frequently to remind myself that HaShem chose my child for me knowing full well what the challenges would be. And then I plough ahead and try a little harder to do better. It’s exhausting, but what else is my reason for being here than doing these acts of chesed, than attempting self-improvement?

  9. Like anonymous above, I also thank G-d every day that all my kids do not have “major” issues. I do not believe that every nisayon thrown our way is something we can handle. I also feel most days that my plate is full, and I do not know how I would cope with something major like this.

    I think it is unfair to minimize what dealing with a medical or special needs issue is like. I had to deal with an extremely sick parent while being very sick myself (and balancing working from home, taking care of two small kids and a husband with crazy work schedule). Money was extremely tight. Local bikur cholim was not willing to even help out with babysitting for my appointments. One of the side effects of the medication was severe depression and major birth defects, were I to get pregnant. At that point in my life, if I would have gotten pregnant with ANY child, I don’t think I would have coped.

    Regarding homeschooling: I hear all the time people encouraging others to homeschool, whether the people have resources for it or not. You are a single parent? You can do it! You work full time? You can squeeze it in! You are mentally unstable? It’s ok, as long as you love them. At the end, it probably does not serve the children well, only makes the parents guilty that it did not work out.

    Ok, sounds a bit like vent here, and feel free to delete, but I do not think that without being in that person’s shoes, it is possible to judge.

    Maybe the family has no health insurance and having this baby will endanger the future insurability of the rest of the siblings (personal experience and friends who had a daughter with diabetes, could not get ANY insurance). Maybe the marriage is falling apart, and this is just a cherry on top. Maybe instead of aborting, they are trying to reach out to that couple who has appropriate resources for this child, and people are just being supportive.

  10. As an adoptive mom of a child who was drug exposed.and.now considered Autistic, I can’t imagine life with out him. I have 4 total. I won’t go into details, but I have also given up a child. There are many life circumstances. G-d needs all kinds of moms! :)

  11. Hi Avivah,

    As usual, your perspective is thought out, balanced and an invaluable contribution to the public discourse on this issue. However, when I read that thread on the other site I was struck by something else entirely: most posters automatically assumed, despite the dearth of information from or about the family, that they were “discarding” their child because he has Down Syndrome. It seemed to be a given, the starting point for the discussion that ensued, even though that assumption was completely unsupported by any information provided in the original post. Most posters were unwilling even to consider that based on the scant information we had been given (which was posted by a friend-of-a-friend of the family, no less) it was equally likely that there were circumstances other than or in addition to T21 that may have been factors in the family’s decision to seek a foster family for their baby. Over the years I have personally known or have met many families who are happily and gratefully raising children with Down Syndrome, and although I personally do not know of any family who has given up a child with T21 (and have not in the last 15 or 20 years even overheard a negative conversation either from or about real families raising children with DS), I can acknowledge that you do and you have. However, in the absence of any real information one way or the other about THIS family, why the rush to judgment?

    1. I said twice in this post that sometimes a person doesn’t have the resources and it’s necessary. Regardless of their reasons, this is surely an extremely painful decision for them. (From another source in addition to the thread I mentioned, it seems that T21 was the reason for the fostering.) In my post I’m not addressing the specific situation of one family, but writing about a general approach and attitudes commonly seen in the community.

      I’m not hooked up with the disability community here so my perspective is limited. Even with that limited view, the day before I wrote this I spoke to a mother who was fostering a baby with DS because the mother gave him up. I spoke to someone else several weeks ago who is fostering two older kids who were given up. I know someone who fostered four babies with T21 and fields calls in her communities for families who don’t want to raise their child and are looking for homes. Another friend almost fostered a baby girl with DS until the grandparents stepped in to foster instead. I’ve spoken to hospital social workers who told me that babies with T21 are too often – not every day and obviously the minority of cases, but still – left behind by their parents in the hospital. Statistically babies with DS are given up at a much higher rate than typical babies. No one has told me they aborted or gave up a baby with T21, but that doesn’t mean it’s not happening at hospitals all over the world every single day.

      I also know the pressure mothers get from the medical establishment to abort when they find out they’re carrying a baby with T21. I know the questions after birth when asking why you didn’t abort, or do testing that would have allowed you to abort. Since you read the thread that I referenced, you know about the community whose rabbi tells his followers to give these babies up. I didn’t link to an article about the charedi community (written by a charedi mother of a son with T21) shared there because of the chilul Hashem factor. The reality is that our babies are generally seen as a burden, not a blessing. And I’m willing to be serious money (or I would if I were a betting person) that almost every mother who has a child with DS can share personal stories that reflect this attitude.

  12. I don’t know that this relates to the responses,however I’ll put it out there. I used to wonder why I didn’t have an aversion to people that other people used to make fun of and call names and then when I thought about it I realized That it was the way my mother treated people. As a kid growing up in the 1960’s I used to sometimes go with my mom the places that she went. There was one friend that she would visit periodically that I remember that got around in a golf cart type transport. I thought it was really cool, but she used it because she couldn’t get a driver’s license. Come to think of I would ask my mother why she spoke so strange and walked all twisted. My mother told me it was because she was spastic. I took it at that and still don’t know if there is a politically correct name for it today. This woman was married to a man who was also spastic. I thought it interesting that their daughter didn’t match them. She was older than me and probably in high school. I recall her as happy, mature and beautiful. She was also their only child. My mother told me the parents were very upset about that and they would have had more children if the doctors hadn’t told her to get sterilized when they had their daughter. I think they even wanted them to give up their normal child for adoption. They didn’t think that spastic parents could raise children. Note that this family was not on welfare and the father worked a fulltime job. I don’t know if the mother worked or not’ but these parents raised a wonderful daughter despite their striking differences. Sadly the medical people were prejudice and shouldn’t’t try to play G-d.

  13. Anon, there are so many misconceptions in your idea of What DS Is and How It Affects Life, that I almost cannot begin! Let me just say for the record that

    1) I am not special, better than any other mother, nor have extra energy or time. I work, and have a busy household with other kids under age 9.

    2) My daughter Etel with DS – her only detraction from our family in ANY way is that I am accused by the other kids of actually loving her the most. It’s hard to argue or pretend not, too. Because nobody in our family gives love and maintains warm connection like Etel. While no angel (she is a typical 4 year old, testing limits, wanting independence sometimes etc) she is absolutely captivating – magical even. She is 4. When she makes a bracha, or participates in Havdalah, sniffs the spices and her face lights up while she says “Oh! Smells good” She laughs easily and looks around to share her joy, the whole table’s faces light up with pride and love. It’s difficult to explain the impact she has on people both within and without our family. She reaches right into people’s hearts and everybody loves her.

    I am sorry for people like you. I am sorry for the misinformation you have received and which I suppose is responsible for your narrow minded prejudices. But mostly I am sorry you did or would reject what is the SINGLE BIGGEST positive lesson, single biggest BLESSING available to your family. Etel has brought out the best in my mothering. The best in our other kids.

  14. By the way I am not in any way unhappy this baby is given up for adoption! I know that a good life is in store for him!

    I wish that ALL mothers with a prenatal diagnosis of T21 knew there are TONS of wonderful homes for babies with DS. So many innocent babies are killed, it makes me sick.

    My daughter, she is in a typical preschool, just started. She already knows her colors, numbers and most of the alphabet. She talks though she is language delayed, she does not appear to be cognitively delayed (there are supplements she has been taking which help a lot).

    Mostly, I look at my daughter. She represents perhaps hundreds or thousands of sweet, interesting, loving INDIVIDUALS who have been denied the opportunity of even being born, based on a Diagnosis. She is much more than a diagnosis, she’s a little girl who loves ballet, “cooking”, playing with dollies, trains and puzzles, and flash cards with me. Copying her big sister, wrestling with her big brother, running much too fast and falling down, and petting strange doggies!

  15. I think every person thinks they know their strengths until they are given a nisoyan. Hashem gives a nisoyan He also gives the strength and ability for it. A challenge is like a double edged sword either you grow from it and you own it or you give up and become a victim from the challenge. Every person has the possibility to go as far as they want they create how far they can go, whatever you think you can or can’t is true. I see that people think when they have a baby with ds they fear they’re a failure because they couldn’t create a healthy baby? but the fear is facing yourself and not looking what other people might think of you or judge you.
    Every person has the fullest potential to face challenges, Hashem also gives us the power to choose. having a child with ds isn’t the only thing, a person who had a difficult or abusive childhood has to live with this and what was done to them. someone deals with ds and another deals with not having money or abusive parents or difficult childhood it’s the way we accept it, you create how it is by the way you look at it and this becomes your perspective of life.

  16. hey avivah,
    kol hakavod for your beautiful post. i cannot stop thinking about this, it makes me so sad to see the ignorance in our community.
    btw, did the forum take down the post? bc i cant find it anywhere….

  17. I get really distressed when I hear of people aborting or giving up a child with a disability because they don’t believe they will be able to handle it. Believing they are doing the child a favour! Before I had my daughter I was a person who (I am ashamed to say) didn’t feel comfortable with mentally challenged people. I would have been horrified at the thought of having a disabled child. I wouldn’t have been unkind or cruel to a person with special needs but I certainly wanted to avoid being around them. When my first child was born I knew straight away that she had Down’s Syndrome. I was certainly the person who ‘couldn’t handle this’ but guess what, my daughter ‘told me’ I could. When I looked at her little face no matter how scared I felt something told me we could cope. She is now 8 and we have another ‘normal’ child. Things are not always easy (with either child!) but the love we have received from our children outweighs any hard times. I really wish everyone gifted with a different child would have faith and know that they can do it. There are exceptions and some people have very difficult lives already and in that case adoption probably is the best option. For the rest however there is no excuse. This child is YOUR flesh and blood and you don’t get to send them back because they don’t fit with your vision of bringing up a child. I realise this post dates back some months now but I have just come across it and feel very passionate about this. I hope someone sees it, and maybe is inspired to give their child a chance.

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