What would you do if you found our your unborn baby had Downs Syndrome?
Do you like this story?
Last year that's exactly what happened to Frances Dine, 39. With a 15 year old daughter, Holly, Frances and her husband decided to continue with the pregnancy and she gave birth to baby Erin. In the Daily Mail this week she's written about her experience and making the decision:
Every morning I wake with a surge of joy, knowing I have the
greatest treat in store. I tiptoe out of bed and bend over the Moses
basket where Erin is sleeping. Without fail, she opens her eyes and
grins the hugest smile in the world and, without fail, my heart lurches
with a mixture of love and passionate protectiveness.
Erin
was born with Down's syndrome, and while I know her life is likely to
be tougher than for 'normal' children, I will do all in my power to
smooth her way in life. She deserves it.
When I married my second
husband, Paul, two years ago, we knew we wanted children, so I was
ecstatic when I fell pregnant in September last year. Waiting for Paul
to come home from work to tell him the news seemed like an eternity. He
was every bit as excited as I was.
We told Holly, who was thrilled, but decided to wait until after I
had my first scan at 12 weeks before telling anyone else, although we
didn't foresee any problems. But, as the ultrasound operator at the
hospital passed the machine over my tummy, she paused.
'I've
got some bad news,' she explained. 'I think there's a problem with your
baby.' I was so shocked I couldn't breathe. Paul clutched my hand. All
I remember is being told that the space in the tissue at the back of
our baby's neck (the nuchal fold) was thicker than normal. This
indicates a chromosome disorder such as Down's. It was a Friday, so she
made an appointment for us to see the consultant the following Monday.
'He will explain your options,' she said.
I don't know how
we got out of the hospital. We sat in the car, clinging to each other
and howling our eyes out. We'd expected a perfect baby.
The
words 'Down's syndrome' thumped in my head. What did it mean? What
would our baby look like? What problems would our baby have? But as I
tried to make sense of the news, I suddenly realised that, whatever was
wrong with our baby, it didn't really matter. I would love her
whatever. Paul felt exactly the same. It was like a light bulb going
on.
It had simply never occurred to me to worry about our
baby not being perfect and what I would do about it. But now that I was
suddenly in this situation, I knew, without a shadow of a doubt, that I
didn't want any further tests to determine whether or not our baby had
Down's, especially as they carry a small but very real risk of causing
a miscarriage.
whatever the diagnosis. Knowing that we would welcome our baby, perfect
or not, there was no point doing further tests. I'm not a Christian, so
I wasn't guided by any religious faith. But, once I knew I was
pregnant, I had an overwhelming sense that Paul and I had made this
baby, and we would love her whatever. Even though Erin was only a
collection of cells at that stage, she was still my baby. We had
created her and we had responsibility for her….."
You can read the rest of Frances's moving story here….
Anyone who has kids has had to ask themselves this question: what would I do. Usually, you ask it around the 12 week ultrasound. Some people know absolutely the answer. I know women who have refused to have the diagnostic test for Downs Syndrome because they already knew they would not be able to terminate the pregnancy. Other women are just as adamant that they couldn't continue with a pregnancy if they found out the baby had Downs Syndrome. I know several women who were told there was a high chance of Downs, continued with their pregnancies and gave birth to children who were perfectly healthy.
I also have two friends who have Downs Syndrome kids. Neither knew about it before giving birth. Both kids are beautiful but there are a whole host of problems their families face in caring for them.
With all three of my children, I never got the testing done for Down’s Syndrome. I knew I wouldn’t abort if I found they were at risk anyway.
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my little brother has downs and is turning 11 this year, youngest of 5. he is the most wonderful thing that has ever happened to me and i am so grateful he is here to keep me grounded. he’s very loving and caring and affectionate even tho his speech is weak – however it’s improving amazingly.
these people are truly amazing, some of the most gorgeous caring people i know have downs or other disabilities. i think it makes them a bigger person in that they get through everything we do with less fuss and no complaint even tho it’s a million times harder. i appreciate so much all your thoughts and stories. it’s lovely to share our stories of growth, pain and achievement with those who know what it’s like and care.
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my little brother has downs and is turning 11 this year. he is the most wonderful thing that has ever happened to me and i am so grateful he is here to keep me grounded. he’s very loving and caring and affectionate even tho his speech is weak – however it’s improving amazingly.
these people are truly amazing, some of the most gorgeous caring people i know have downs or other disabilities. i think it makes them a bigger person in that they get through everything we do with less fuss and no complaint even tho it’s a million times harder. i appreciate so much all your thoughts and stories. it’s lovely to share our stories of growth, pain and achievement with those who know what it’s like and care.
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In January this year I gave birth to a beautiful little girl… with Trisomy 18. I find myself in the ironic position of sometimes wishing it was “just Downs” that she might have had instead. Trisomy 18 is the next most common chromosomal disorder prevalent in our society, but with a far worse prognosis than Trisomy 21 (Downs)- google it. She is my second child, much loved and desperately wanted, and we declined CVS and amnio because of the miscarriage risk- I had lost 2 babies in the previous 18 months. I suppose my point is, get tested if you can- if only to be able to brace yorself for the heartbreak and helplessness of giving birth to a very sick baby- or not. Never judge a person for their choices: they are personal, and undoubtedly, very seriously considered ones. None of this is coming out right- I suppose just do what is right for you, and hope for the best.
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This article may interest some people:
http://www.albertmohler.com/2010/04/14/newsnote-aborting-the-wrong-baby/
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A few years ago I read a heak breaking article in a sunday paper telling the stories of two women- one who terminated and one who didn’t. The one who did wrote so openly about her feelings and the process. I don’t know how she survived. It was past 20 weeks and she had to induce and deliver the baby and hold him while he died.
The description was so graphic I new I would never terminate a late stage pregnancy so never did any tests for it.
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I had a very similar experience. Went along to the 12 week scan hoping for a peak at the baby and to see the heart beat. Shock and horror ~ the nuchal fold was enlarged. I was given a print out with some very scary probabilities – 1 in 18 for Downs Syndrome, woah! I decided to have diagnostic testing and discovered my baby did not have Downs but another very rare chromosome abnormality. The confusing part was she had a mixture of abnormal cells being 45X and 47XXX. How she would be affected depended upon the percentages of the mix HOWEVER the placenta was tested and this can be different to the actual babies percentages. The percentages we got were 60% 47XXX and 40% 45X from the placenta.
47XXX also know as “triple X” is essentially “harmless”, however 45X also known as Turners Syndrome can cause a whole host of physical and medical problems.
Basically I chose to proceed with the pregnancy. Late term abortion was explained to me and it made me want to vomit into my own mouth.
The conclusion of this little story is that the percentages were not accurate. She has 90% 47xxx cells and she is totally FINE! Wow, what a journey, wouldn’t wish it on my worst enemy, not knowing what to expect or if I was making the right decision was VERY hard.
I look at her everyday now and feel so BLESSED and grateful, she is beautiful
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gosh what a horrible thing to go through. i had high risk for downs each pregnancy, but it turned out fine each time, but that sounds like nothing compared to what you went through.
so lovely that you have a beautiful little girl at the end of that.. congratulations!!
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I’d probably go through with the pregnancy, because I know so many couples want to adopt, but I couldn’t deal with having a Down’s Syndrome child, emotionally, mentally or financially (my own experience with them has taught me that they’re very loving and special kids that someone will desperately want, but I can’t handle more than a few hours).
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It is a tough decision to make, my daughter is development delayed, currently awaiting genetics test results. Although it can be tougher at times, if I had been told before that she would have some type of special needs I still would not change it for the world. She is my angel, she is so happy and she sees things in a different way to even the other children her age.
Now my current partner and I want to have another we talked about the possibilities if my daughters case is genetic then we have a 50% chance of the same in a girl and 100% chance of having a boy with most genetic disorders.
We talked about the genetics testing while pregnant too and we decided against it all, I never knew with my daughter and I don’t want to know till we come to it with the next child as sometimes those tests can be inaccurate and why stress when it might not be right.
We have a little ray of heaven here and nothing would change my mind about it.
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I have also just read this whole blog and am wiping tears from my eyes. I have never commented on one of your stories before Mia, but the sensitivity of this subject, and subsequent comments propelled me to do so. I just want to say that Cath’s comments were absolutely beautiful, and should be printed and handed out in every ultrasound clinic around. At 28 I have just had my first child, a beautiful little boy, Leo, aged 4 months. I have nowhere near the life or motherhood experience that others do, and consider myself very level headed, however I wholeheartedly agree that you never know what you (or the world) might be missing out on if you never get to meet your child.. My sister has a disability, as does my niece, and whilst I look at my mother and sister-in-law in awe as they unconditionally love and encourage their disabled child every day (as much as their other children, if not more), I just hope that if i am in the same situation one day, i will also rise to the occasion. DS kids have SO MUCH love to give, they bring a smile to my face everytime I look at them. That’s the emotion you want a child to provoke. It is each mother’s own very personal decision, but as I watch my little boy (very awkwardly) roll over for the first times, I cannot imagine not having him here.
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Gee, I hope this isn’t out of line. I played a little gig last night. Just a trio, at a sedate club, some of the people had brought their children. One of those children was a Downs child. Another family had a young adult Downs sibling.
The lady singer, who has in common with myself, an acquaintance with the Downs boy I wrote about earlier, glanced between lyrics, and mentioned between songs, how cute the Downs kids look. She also said, between, choruses, ‘I’m glad my kids aren’t like that’. Sometimes comments like that are acceptable when in a work situation, but not so much in a social environment. Yet this woman is a caring, intelligent, ‘wonderful track record as a’ parent, a fair bit into her 40s, though she still made this remark to me. Admittedly she spoke between 12 bars of rock’n’roll, but nonetheless, heartfelt opinions spoken to a colleague. The Downs kid was sweet as. The adult, well, she was an adult nothing less, nothing more. No biggie there.
Meanwhile other less socially challenged children managed to create mild havoc amidst the social event, before leaving the room unaccompanied, whereupon they apparently smashed bottles and caused damage. This would have gone unnoticed, if not for the kids running back into the room with a couple of them bleeding, the extremely tolerant parents cleaning the damage, without a moment of chastisement, meanwhile the Downs kid and adult were behaving wonderfully, go figure.
Mind you, the Gig was only half behaving wonderfully himself, playing brilliantly, of course, but being a tad cheeky. Such is life.
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Wow, so many touching stories. I don’t know how I would react to a high risk ultrasound, and I don’t think anyone can sit in judgement of the choices that are made in that situation.
I do know it takes special parents with lots of time, love, means and support to raise kids with a disability and I’m not entirely sure I meet the requirements.
I agree that every parent wishes for a perfectly healthy baby, why would you aim for anything less?
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I agree that it is such a difficult decision but knowing how I have coped raising my first child I wouldn’t feel confident of my abiity to mentally & physcially cope with a child with Down’s Syndrome. I have a brother with a mild disability and he went to a ‘special school’ about 20 years ago. Whilst I have seen caring & loving behaviour towards him & his school friends I have also seen the absolutely horrible way many people behave toward those with disabilities (including job agencies and people who claim to be there to assist people with disabilites). Now I have a son I also have more of an understanding of what my parents must feel knowing that in years to come their son may face life without their protection. Therefore, I could not knowingly bring a disabled child into the world.
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My 55 year old cousin, Jenny, died in 2005. Jenny had Downs Syndrome and had a happy life. But when Jenny was about 12, being picked up daily by the bus that took her to her special school ( provided for by parents and friends of DS children), her mum died and her three older brothers and her dad had to cope with puberty and many other things, which I think they did with much love and good humour. Her life included part-time residential in Crowle, where she had previously spent her “school days” then later full time. Then our glorious government decided that people in these homes should be out in the big world – Jen was placed in a group home where among other things she had to find her way to work – packing plastic cutlery and so on for Qantas catering, I think it was – and it meant crossing busy roads and tackling transport, which somehow she did, while her family struggled to overcome this system. Eventually bureaucratic sanity prevailed, and she was no longer required to live outside her beloved home. By the time Jen died she was also suffering dementia. Her dad was in his nineties, had had a stroke but was still active – I think maybe the death of his baby girl allowed him to let go without care or worry last year.
We all loved Jenny, she was a dear sweet girl. But would I terminate if I had prior knowledge of that condition? Yes.
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GG, you asked “Why do people care so much about having ‘healthy’ children…” and objected to me being glad my daughter not having DS.
I couldn’t say it any better than an old internet friend that I met on the prenatal testing bioard on ivillage – her DD was due same time as mine, had the same marker and she was born with DS. She said that we shouldn’t feel bad about wanting our children to be perfect. We have a right to want this. It is the same as not wanting your child to have any other condition that affects their life, be it autism, aspergers, trisomy 21(DS) or any other condition.
Sure, I would have loved her just as much, but I am glad we don’t have to deal with it. Just as I am glad we don’t have to deal with autism. Or any of the other issues that are looked for during the ultrasounds.
Yes, I hope for a perfect baby. Don’t we all?
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‘me’ and ‘Sarah’. I agree, it is such an experience when you meet a Downs kid, or know them for some time. For me it’s scary, as in how did the parents cope so well to bring this child into mainstream community so seamlessly. I am always humbled beyond belief.
I’m sure we all are. I feel inadequate imagining what it is like to be a parent of such a child, obviously, that’s all I can do, is imagine. These parents deserve, require and should be afforded the highest level of financial and medical help available. We are not a society otherwise.
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Rosie’s story raises a very important point – unfortunately there are a lot more people that just the child to consider. It is a hideous situation to face, but (if you choose to engage with it), medical science means we do have the choice. And you need to consider the life of that child, your other children, your extended family. And this is not just a decision in relation to Down’s. There are many other conditions that may arise that may have less or more sever impact on a child’s mental and physical health.
I had two close friends recently – one had an amnio and all the tests and discovered at around 22 weeks that her child was 90% likely to be a ‘vegetable’ (sorry, can’t think of the nicer term) and would likely not survive for more than a year. She decided for the sake of the child, her relationship, their other children and their family to terminate the pregnancy. My other friend had an amnio, and it caused a healthy child irreperable damage. Both friends had to give birth to their children mid way through their pregnancies. I now have a third friend knowing both these stories, faced with the decision of whether to have the amnio or not. It brings tears to my eyes just to think about it.
In answer to your question Mia – I have no idea.
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I met a 55 year old lady with Downs Syndrome a few years ago. She was a pure delight, bubbly and cheerful and independent.
Yesterday i was eating my lunch and heard a perculiar noise and looked to see what it was (it was in a quiet food eating area of a outdoor eatery). I turned to see the hugest smile on a Downs Syndrome lad sitting having lunch with 2 ladies. I smiled, not because of the noise he made, but because he looked like he didn’t have a care in the world and was enjoying his lunch. So was I mate, so was I. You reminded me how great having lunch with treasured company is!
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Ah, I just read the whole article and am wiping tears from my eyes. When I was little I went to childcare with 2 down syndrome kids and they were great. Some of the funniest people I have met.
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ok, i admit i am not a doctor, but if a child does not get lukemia/heart defects they can live a long and happy life. it wasnt always the case, but it can be now. we have been told my brother can live just as long as everyone else. Don’t we all have a chance of lukemia and heart defect?
It shouldn’t be a deciding factor in a human life.
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Rosie, what an awful thing to have gone through. And Brooke, I really appreciated your story too.
But as a doctor I have to contradict gg about life expectancy for people with Down syndrome. Their life expectancy is shorter than that of people without the syndrome, not only due to cardiac problems but also there are a few other things that they are more susceptible to, including leukaemia.
That said, my husband’s best friend has a little girl with Down syndrome and she is a delight.
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Brooke, that people would say such things is just so wrong.
I had the test for my 2nd pregnancy, after my 12 week scan threw an ‘interesting’ result.
It showed something with a 20 mile long name, that I still cannot pronounce. What it meant was that the baby would be stillborn, or die shortly after birth. I wasn’t taking a child home.
With 4 other children, my husband and I made the heartbreaking decision to terminate. If there had been a chance of the baby surviving, we would have gone ahead with the pregnancy.
I had the test again with my 3rd prenancy, and it was clear. I have 2 beautiful boys, and I love them dearly, but I have days where I wonder how life would have been, had I been able to bring my little girl home.
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A baby is a gift from heaven…they are little bundles of joy no matter what gift wrapping they come in.
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Why would anyone want to terminate the pregnancy?
I am sorry, it just makes me so mad!!! My older brother has down syndrome. There is nothing wrong with someone who has down syndrome. My brother is a double black belt at martial arts, goes to the gym 5 times a week and is completing year twelve. That’s more than I can say for a lot of ‘normal’ kids.
comments like ‘Luckily in my case my daughter didn’t have DS.’ make me realise just how ill-informed people are. One commenter asked:
‘Do people with Downs Syndrome have the same life expectancy as someone without it?’
Yes. Of course they do. Some have additional heart problems that can cause problems, but there is nothing wrong with them. My parents didn’t find out Jack had DS until he was born, and they loved him just as much. He has never been treated differently, he isn’t ‘special’, he is completely normal, he just has an extra chromasone copy.
Why do people care so much about having ‘healthy’ children they would kill one because it had DS. In my opinion, it’s terrible.
Your ‘normal’ kid could have a car accident and become a quadrepligic. They could become blind, or contract cancer. I can’t see how people can be picky about disabilities, when they can achieve so much. Especially with international day of people with a disability next week.
I love my brother to bits. He is the most amazing person I know, and I wouldn’t change him at all. He is my hero =)
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My brother has downs syndrome.
And i wouldnt want him any different than what he is! Thats just plain wrong knowing you have a downs kid then gettong rid of it! I love downsyndrome kids, they are the sweetest, friendliest kid you will ever meet and im glad my brother is.
Charlotte x
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Oh Brooke (and everyone), thank you for sharing your story. I am gob-smacked by what you say about people judging you. Are they insane? You are a better person than I am for not punching them in the face. I cannot begin to imagine what you’ve gone through these past weeks with the spectre of two such different outcomes hovering over you. What wonderful news that everything is OK…..
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Wonderfully heartfelt comments, everyone. After reading Brooke’s comment I really didn’t think I should add anything. I’m not a parent, but then I thought perhaps a mention of some awesome people I have known for the past eight years or so. They have a Downs son. He’s now a fine, strapping 17 year old young man.
I first met him when playing at a concert for his school. His parents seem enriched by his life. We don’t see each that often, and as with teenagers, a few months is a long time in their development. Each time we meet, he seems to have grown from strength to strength, displaying all the vigour of youth, yet living with an unashamed joy. He has marvelous parents.
As he and they grow older I can’t imagine what is in store for them as a family, though I know that whatever it is, they will have addressed it with their son foremost in mind.
‘Australian of the Year’ is often awarded to athletes or pop singers, yet families such as these achieve far more worthy, compassionate and loving outcomes for our world.
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Another thought:
How much of this is a cultural thing? Where do we draw the line in what a disadvantaged or disabled child is? Where our friends live in India it is ILLEGAL for doctors to tell the parents what the sex of the baby beacuse they’ll terminate a girl. In rural India it is a severe disadvantage to have girls. When our Indian friends had a girl they were sent CONDOLENCES from people because they had a girl. Isn’t in unimaginable?
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Gosh. I just don’t know what to say. Good discussion topic Mia, and so wonderful to have people here who are able to share their heart and have people be really respectful and supportive whatever our thoughts are.
I don’t have children yet, we are trying though and I have thought about this alot. My older sister has an aquired brain injury from when she was 7yo (and my mother was 3 weeks away from giving birth to me) so she ended up going to a ‘special’ school in her later teens where some of her closest friends had Downs. I personally would not terminate a pregnancy based on a Downs result, my husband and I have made that decision, but if I did… surely every time I saw a kid with Downs I would think about the life that could have been lived. I just don’t think I could cope with that. I don’t think I’d be strong enough.
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I have brother with an intellectual disability which was unknown until aged 2 (we are told it was a result of his immunisations as a baby) however he is completely perfect in my eyes hes just lovely! He has many down’s friends who are just as great, extremely funny and hold great personalities. unfortunately in my eyes its a bit of a case of “shopping” for babies. Perhaps a downs baby is seen as out of the picture or not what these parents ordered, regardless, that baby was meant for them and there are so many support groups for them i think its very sad that women terminate these pregnancies.
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I was given this as a possible diagnosis (along with three other possibilities – all more serious issues) with my daughter 8 years ago – because the nuchal screen wasn’t yet available this was at 20 weeks during the morphology scan.
After a host of blood and genetic testing three were ruled out, but the DS scare remained. I opted against amnio because of the risks. While I wouldn’t have a termination, if there was a chance to find out without harming baby I’d have jumped at it and this is why I opted for the nuchal screen both pregnancies.
But the few weeks following that ultrasound nearly ended my marriage. I never cried so much. Luckily in my case my daughter didn’t have DS.
The situation would have been different in the case of any of the other three, as these would have been diagnoses incompatible with life (that sounds so sterile!), but the question I asked myself was “If we were in a terrible accident and she was left with a serious disability at age 1, would I consider ending her life?” and of course that is a firm NO.
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Brooke, it really sucks how people are reacting. I think you did the right thing. If there’s a possibility that you’re going to have a baby with any sort of disability, then you need to prepare yourself as much as you can, and if that means having an amnio, so you know for sure whether the baby is alright or not, then it means having an amnio. I also can’t imagine terminating a pregnancy just because the child had Downs Syndrome. I’ve met quite a few people with Downs Sydrome, and while they’re a lot of work for families, and can be a little difficult at times, they’re usually really, really sweet people.
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Yes a very tough one.
I didn’t have a transnucal lucency (sp?) scan until my 3rd child due to my age. At that stage I had a 2 year old and an almost 1 year old.
Fortunately it came back very unlikely that I was carrying a Down’s child but it did cause hubby and I to have the talk. If the baby had Down’s we probably would have terminated the pregnancy. With 2 small children, I don’t think I could have handled the challenge.
If it was my first pregnancy it would have been a different story.
I think Frances and Paul are inspirational and young Erin is a very lucky girl.
Do people with Downs Syndrome have the same life expectancy as someone without it?
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Thank you for posting this story. Having received our amnio results only yesterday it almost feels as though this post is written just for me.
6 weeks ago we had our downs screening tests for our first baby only to find the results were not great. 1:18 chance of having a baby with downs when most people my age have a 1:8,000 chance. Anything worse than 1:300 odds puts you in the high risk category, and further testing is offered.
After two weeks of thinking of nothing else and endless tears we decided to go ahead with the amnio for a few reasons. We had decided before even getting pregnant that we would not terminate a child for any reason. So we wanted to know for our peace of mind, to be able to choose and appropriate hospital, to take the stress off of my body (the worry was making me physically ill) and to be prepared if our baby did have downs.
We have found people to be so judgemental of our decision, both to have the test and to not terminate. Many think we are selfish for having the testing, saying that the 1 in 200 risk of losing the baby due to the test is not worth it. Others seem to think us selfish for choosing to continue with the pregnancy no matter what, as though our child wouldn’t want to live on the basis that he/she has downs. I was surprised and saddened by some peoples responses, especially in that none of them had been in our situation.
Reading Frances’s story made me confident that our decision to continue was the right one for us, that I would never regret the birth of my baby, but would always regret not giving this little person the chance to live. Luckily for myself and my husband our amnio results gave us the all clear and the reality of Downs is not something we will have to live with at this stage.
I think the decisions people make regarding their children, whether they are born or in utero, are personal and should not be judged by others. We should just admire people for having the strength to cope with what life has thrown at them, not matter how they deal with it.
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i’m still wiping off the tears… so so hard. i can’t say i know what i’d do. i just pray i will never be in a situation where i have to decide…
i really enjoyed your comment, though, Cath. All very true, and Lu’s friend is a case in point. I guess we just feel more secure under the illusion of control. It’s a very Western thing too, apparently. Research shows Eastern cultures to view life as far more unpredictable than us westerners…
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This is such a tough one.
I have 2 friends as well who have Downs syndrome children – neither knew until birth. I also have a friend who miscarried because of the 18 week amnio and the baby was perfect.
These scans dont guarantee perfection. We cant control every aspect of our lives and I think sometimes, especially thanks to the wonders of modern medicine we hold on to that control too tight. I have another friend who has had an amnio with each of her children because she says she couldnt cope with a disabled child. Sadly one of her children was born very early and suffers on-going health and physical problems anyway.
Each human life is unique and special. Thats not to say caring for a child with Downs syndrome is a piece of cake, its not. But these kids also bring so much more to a family than you could ever imagine unless you knew them or lived that experience.
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One of those questions you just don’t want to think about because it tears you apart. On one hand I believe life gives you things for a reason, on the other would you be able to survive emotionally, financially, mentally and relationship-wise?
I really respect parents who decide that Yes, we are going to do this, but I also understand parents who know that they could never cope.
I don’t know what I’d do.
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That’s a beautiful story, and a beautiful baby. In my work, I often work with parents who struggle with this decision, and also with those who deliver a Downs, (or similar) baby unexpectedly. I find it really hard when they choose to terminate a baby that may have some special needs, but I have to respect that and empathise with them.
Often though, families make the decision to proceed no matter what, and that’s pretty inspiring. Watching them grow as families, and learn how to cope after they deliver a baby that’s in some way not what they expected, is beautiful. After they go through the normal grief reaction – denial, anger, etc, (and they are most entitled to it. Because it’s never ‘fair’), they eventually get to the acceptance bit. And then they become more than they ever thought they could be – as parents, individuals, and (usually) couples.
I’m not passing judgement on anyone who decides they couldn’t proceed with a pregnancy when they know the baby may have special needs. But it’s a weird situation where you can make that choice , because you never know what you (or the world) might be missing out on, or what you’d be capable of, if you make it. We kid ourselves that we have all this control over things – life, death, relationships. Our weight! But we really can’t know what’s around the corner – if we did, would it change the decisions we made? Would we marry the love of our life if we knew they were going to die early, or leave us? Would we give up jogging, even if we loved it (obviously I’m not talking about me, here!) if we could see into the future and knew we were going to get hit by a car? Statistically, that’s always possible anyway.
And when it comes to our kids and babies, we really have illusions of control. We think we can actually guarantee their health and safety by being acutely aware and cautious at all times. I really did want to wrap my babies in cotton wool when they were born – I’d get quite upset if they even scratched themselves! I couldn’t even stand anyone other than my husband or me driving my first son – seriously! I had to get over myself, because I knew eventually, someone else is going to have to drive him somewhere! He’s even going to drive himself somewhere!
The point being, you can make the decision to not deliver a child that’s not what you’d hoped for, and deprive yourself of a the joy of knowing that person and seeing what they can achieve in the world. Or you might carry a baby to term and then experience life changing complications during the birth. Or you can deliver a healthy baby, and they might experience difficulties of some kind down the track a bit. Or you might. Who knows? I hate to say ‘Life’s like a box of chocolates’, but you never do know what you’re going to get! You can try, and pretend, but you can’t immunise yourself against pain and heartbreak. Maybe all you can do is accept that things happen for some reason, and have some sort of faith that the human spirit is strong and can actually cope with quite a lot more than we think.
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Oh, wow, that’s a tough one. Having just had a baby ( a perfect little girl who is now 10 weeks old) myself, I know that I would have fallen into the group who want to know at all costs. I know myself and I know that I would have a hard time dealing with a special needs child. But to have a termination would have been heartbreaking as well – it’s just an awful awful situation to be put in.
I take my hat off to Frances and her family. They have taken on a difficult task – Erin is lucky to have them as her family.
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