Last month, someone very close to me (I will call her Naomi) went through a very tough decision. She discovered on the 19th week of her pregnancy she was carrying a baby with Down Syndrome. Although she works as a social worker, she had no doubts about what she was going to do, but the people around her were not so sure.
Down Syndrome can be detected during pregnancy by checking the amniotic fluid (Amniocentesis) or after birth by a quick physical test. In 1866, a British physician named John Langdon Down described the condition. Almost 100 years later, Jerome Lejeune discovered it was caused by an extra copy (whole or part) of the 21st chromosome. The chance of having a baby with Down Syndrome is 1 in 733, but it becomes more common with the age of the parents.
Apart from very distinctive facial features, the average IQ of kids with Down Syndrome is 50, as opposed to the general IQ average of 100. Their health is very poor and their life expectancy is very low, and even though their life expectancy is increasing, the intellectual and physical disabilities remain part of their life and the life of their parents.
The announcement of the condition came to the couple as a shock, but surprisingly, their family and friends took it even harder. While Naomi talked to people on the phone, she found herself comforting them, rather than them comforting her. Some people even said silly things, not because they were mean, but because they had never experienced the grief of losing a baby. It reminded me of the things people said to me after losing my second baby, “Never mind, you will have another one”. As a grieving mother, I was not in the right state of mind and that sounded to me as if I were a machine on an assembly line, going for make the next product.
It was amazing to hear how people reacted. The first reaction was, of course, “Is it definitive?”, “Can you have another test to make sure?” and “Is there anything they can do to reverse this?” Unfortunately, the Amniocentesis merely confirmed the earlier Alpha feto-protein test result that clearly showed a problem. The doctor showed her 5 different tests indicating an extra 21st chromosome.
The second was a religious reaction of accepting what God had given her and having no right to stop the pregnancy. Personally, I have an issue with this position, which I see as hypocrisy. I look around me and see millions of religious people doing their best to cure the illnesses that God gives them. They build houses to stay away from the weather God gives them. They innovate and an create better technology, making lots of progress and showing no sign of accepting what God gives us (unless of course you decide that what God gives us is the mind and body to do just that).
I remember the ethical debate we had during my special education studies. We talked about “innocent lives”, “rights” and “choice”, but how on Earth can you use “right” and “choose” in the same sentence? It is an oxymoron!
I always thought that when talking ethics, we are only debating whose definition is more important? Who is more important, the Down Syndrome baby’s life or the lives of about 50 people around them (parents, siblings, grandparents, uncles, aunties, cousins and friends) whose lives will change significantly? What about the education and health systems that need to support them for the rest of their life?
Throughout the discussion, I was surprised by parents of kids with Down Syndrome who justified their own condition. I am not talking about those who discovered the condition at birth and had not known their baby might have Down Syndrome. Those people should be admired for doing the best to make the most of this condition and find the “gifts” in a bad situation. We can learn from them how to make the most out of life and how to deal with the condition, but cannot take their recommendations to abort or not to abort the pregnancy.
I have heard some people talking about the baby’s right to live and that the parents have no right to kill a baby just because it is “damaged”. I do not know about you, but I find it more problematic when parents cause damage to their babies by smoking, using drugs and abusing their body during pregnancy, but I do not hear the same noise being made about these things.
It is amazing that the discussion starts when the test shows a bad result and not when the mother decides to have the test. Why would anyone do a test, especially a risky test like Amniocentesis, if they plan to ignore the results?
As you can see, I am very emotional about it. I have worked with children with severe physical and cognitive disabilities and supported their parents and I have no idea why anyone would voluntarily do this to themselves. The only person I would take advice from is someone who would make the same choice twice.
Personally, I do not believe I could tell someone else what the “right” thing to do is, because I believe that in this case, “right” is something that no one else has the “right” to choose for you. People who do not have to deal with the consequences of their judgments lose all their “rights” to the decision.
Therefore, the poll is not about whether someone having to make that decision is right or wrong but what would you do if you had to make that choice.
If you found in the 19th week of your pregnancy that you had a baby with Down Syndrome, what would you do?
May you never have to face this choice!
Ronit
Divya says
November 1, 2011 at 6:23 PMAm going through a similar crisis and hope that my baby is normal. Just had the triple screening and the pregnancy is high risk.. before i get the diagnostic tests done, I wanted to consider the options.. Please pray for my baby… i would not want to kill a human being that i have carried in me but at the same time i WILL NOT commit the sin of bringing a child into this world and subject him to challenges throughout his life… he’ll have to find other ways to learn the lessons of his life…
ronitbaras says
February 1, 2012 at 3:55 PMDivya,
May the force be with you with whatever you choose to do!
My prayers are with you.
Vonny_au says
July 24, 2011 at 10:27 AMAmniocentisis has a risk of around 5% & is usually performed around the 20 week mark of pregnancy. Chorionic Villus Sampling is another test available done as early as 10 weeks & is less invasive & the risks associated are less than 1%.
At the age of 34 i was pregnant with my third child, with no history of birth defects on either side of my husbands or my family, so either of the above tests were not on offer to me. The birth was difficult & we were both shocked at the news our daughter was born with Down Syndrome. After whisking her away for numerous tests they brought her back & informed us that she ws a healthy little baby. Not all Down Syndrome children have heart defects & complex health issues but there are many that do. I’ts also a myth to suggest that their life spans are shorter than ours, if they dont have health issues. My daughter is almost 18 years old & in all honesty if i had known before birth that she was Down Syndrome i would have terminated my pregnancy. When she was six i noticed her development was’nt in line with other Down syndrome children & after many tests by several different health professionals it was confirmed she was Autistic as well. It’s been a long hard road, & the the pressure a child with special needs can place on families is enormous. Two out of 3 marriages end up in divorce as a result & yes im another statistic. Having a poll to vote on what you would decide to to do, is irrelevant until you’re personally faced with that situation.
ronitbaras says
July 25, 2011 at 3:21 PMVonny,
I was in a similar situation. No heart defects in the family. Wonderful pregnancy and a child who was born with a heart defect. I am not sure if I was lucky or not but he died 30 hours after birth.
The information about Down Syndrome babies is not mine. This is the information they will give you in hospital when they talk to you about making the decision whether to keep or terminate the pregnancy. I personally did not make us this statistics and remember it is a statistic. Not all kids will be like that, it is an average. It is wonderful that your daughter is on a different place. As you know, Down Syndrome, much like many other defects has levels and ranges. I worked with Autistic children for a while and in a whole school there weren’t 2 kids that had the exact same symptoms.
I think your comment proved my point that no one can be the judge of such choice.
Though, people who faced the situation do not rally vote, they can only justify or regret their choices. – they no longer have choices.
They have made a choice already and voted with their bleeding heart.
May no one will have to face such choices.
Ronit
Vonny_au says
July 25, 2011 at 8:36 PMI have noted throughout all your comments your political incorrectness. Down Syndrome is not a defect it’s a chromosonal disorder. When confronted with the possibility of having a child with any abnormalities, the correct procedure is for the hospital to refer you to a geneticist. It is then discussed with you the risks involved, & any associated complications, allowing you to make an informed decision. No parent needs to “justify” their decision on what ever choice they make. Many children born into the world with abnormalities, have diagnosed conditions. No-one wants to put labels on our children, but when you consistently refer to them as “retarded & defective”, you might want to consider how offensive that is to carers, parents, & the children & adults with disabilities. I live in Australia & if i presented health professionals, associated support workers in disabilities & special developmental schools with your references & terminlogies, they would be mortified by your derogatory comments. As a parent of a child with special needs i’m appalled by your lack of research. I dont think your well enough informed to have opinions on this topic. Working in special schools as an assistant, or teachers aide does not qualify you as an authority. Best leave that to the parents & qualified professionals :/
Lisalisa073 says
April 28, 2011 at 3:14 AMI totally agree. A woman’s right is exactly that. Right or wrong no judgement should be made on the decision or the person whatever they decide to do.
And yes, a strong relationship between mother and father is a must and they both do have to be involved as with any other child. I love to speak of my experience with the situation and let people know, it’s not as scary as it seems.
Lisa
ronitbaras says
May 3, 2011 at 10:57 AMHi Lisa,
Thank you for your comment.
You are an inspiration.
Having a good relationship between parents is a must for any parenting adventure. For having a child with difficulties, any difficulties, it is a bigger test.
It is wonderful that you speak about your experience and it is wonderful you can help other parents.
Happy Parenting
Ronit
Lisalisa073 says
April 27, 2011 at 6:47 AMI found out my baby was going to be a girl at 21 weeks. I also found out she was going to have Down Syndrome at the same time. I had the AFP then went and had the amneocentesis done. With a 1% chance of miscarriage i felt i needed to know.( I had a greater risk of losing her in a car accident). Not because i had a decision to make but because i wanted to educate myself on the disability to be able to know exactly what i was in store for.
As a mothers we always want the best for our children and are willing to sacrifice whatever for their health and happiness. We wonder who will care for our children if something happens to us whether they have a disability or not. People assume that because a child has DS that it will be more difficult. Let me tell you in my situation, it’s not. I can also tell you that i have not met one mother yet that regrets having their child born with Downs.
My child was born with a heart defect but its mild and will only affect her as far as over exertion. So far thats it. She sleeps, she laughs,she cries just like my other children. My children without disabilities go to the doctor more than my daughter with DS. I dont put my responsibility on anyone other than myself and her father.
The education and health systems dont have to support my child any more than my other children either. There are people and organizations put into place for none other than the reason that everyone deserves a chance to have the same education and health insurance. The government does not pay for my childs doctors visits we do. I cant say the same for drug addicts and prisoners.
The choice I made wasn’t that of I have the “right” to abort or not. It was “am I strong enough to take care of her the way she deserves to be taken care of?” I educated myself and she’s happy and healthy and the family and other people around her consider her a blessing. If I had the choice again, I would make the same one.
ronitbaras says
April 27, 2011 at 5:25 PMThank you Lisa for the insight,
It is wonderful testimonial of strength and confidence.
I think the point you make at the end that the choice was am I strong enough or not? is the most important thing.
I think not everyone thinks he is strong enough. In fact, as a special education professional, working with many parents of kids with disability, a disabled child can influence negatively on parents’ relationship and cause many separations.
So, no! not everyone is strong enough and I think it is everyone’s right to ask himself/herself that question and answer it and we as a society must respect every answer.
Every child, once born, regardless of his imperfection, is a blessing.
K.S. says
February 28, 2011 at 8:37 PMHi Ronit,
I found it this a very healthy opinion and I found myself nodding in agreeance.
I myself have worked with children with disabilities for years, and while I am in complete agreeance that everyone has something to offer our society not just the physically perfect. I doubt if anyone who had a disability would choose to be born with a disabilty if that choice were offered.
“It is amazing that the discussion starts when the test shows a bad result and not when the mother decides to have the test. Why would anyone do a test, especially a risky test like Amniocentesis, if they plan to ignore the results?”
For my first child, we chose not to have a test for down syndrome of any kind.
Our reasoning was, we knew and loved many children with disabilty we would accept this child as it would come out.
My son came and while there was no obvious disability, we expereinced many years in and out of hospital and he continues to have minor health issues.
I knew that once I had expereinced what it was really like to care for a chronically ill child I would never willing make that choice again. If I were offfered a test based on risk, I would take it and then decide.
I am not sure if by 19 weeks of pregnancy I could easily abort, knowing the bonding that occurs by this time. However knowing the ongoing pain for not only myself, but my child and my partner and the family as you pointed out..is that not worth consideration as well.
Also to bring a child into the world knowing that they would need support for the rest of their days (in some form dependant on severity) Who would then care for this child after I was unable to?
Very tough emotional choice, but as you have said an important choice.
K
ronitbaras says
March 1, 2011 at 4:52 PMK.S,
I have a friend who had a perfect and healthy child who that after an immunization became retarded. His is over 30 now and can hardly hear, see and needs constant support. He is a wonderful kid. We love him dearly. Everyone loves him but my friends constant fear is that one day, she will be gone not sure who will take care of him. (She is 60 years old). I think your point about who will support them after you are gone is a valid point.
I don’t even know what I would have done in her situation. I have 3 kids and they are healthy and perfect and they hardly saw a doctor in their life. So if I am faced with such question, I answer it from my position now, which is not a real position because saying ” yes, I would” and ” no, I wouldn’t” is not the same as actually doing it.
I believe those who choose to abort and those who chose to give birth are brave people, though I wouldn’t want my bravery tested. You need courage for both decisions but what you don’t need is judgment – regardless of your choice.
My second child was born with a heart defect, he died after 30 hours. The Cardiologist who tested me on my forth pregnancy said to me. With your second pregnancy, you had 1:20000 chance of having baby with a heart defect, now, your chance is 1:10. I prayed for days not to have to make that choice, while he was testing the heart during the pregnancy.
I don’t envy those who need to make that choice and if there is one thing I can do to make a difference is create awareness to their full right to chose whatever they think is right for them, without the judgment of others.
May no one will have to test this kind of courage.
Ronit
Vonny_au says
July 24, 2011 at 5:51 PMThere is no scientific proof to date that immunization causes mental & physical defects. There are however a lot of so called “experts” out there that would try & convince you that there’s a connection. I might also add that referring to someone who has “mental retardation” is politically incorrect. No different to calling a person with Down Syndrome a Mongoloid. For someone who claims to have worked in the disability sector i find your comments are ill informed & offensive.
Ronit Baras says
February 11, 2011 at 12:18 PMAnn,
Oh, I find lots of value in the lives of kids with disabilities or special need, I have dedicated my life to them.
The notion of perfection is not the issue here. We all want to have the perfect life, the perfect partner, the perfect house and job. There are many choices we make in life to reach this ” perfection” I do not see any problem with that.
Look at the divorce rate – people make decisions that destroys lives in search for this perfection.
This is not the issue.
The issue is the rights we have, or not, to judge people’s choices to change their life and take a different parenting journey or not?
I think it is a loss. I think it is a hard decision. I happened to think that in the circumstances Naomi had, she did the right thing for herself, as we always do the best we can with what we have. ( if we do talk about perfection, I think people are perfect, just the way they are)
A poll is not to convince me, Naomi or any other reader what is the “right” thing to do as I do not believe the “right” thing exist.
As humans, we always, but always justify our actions. This is why I asked the poll to be “What would you do?” instead of what do you think of Naomi’s choice.
Her choice is hers, she will have to live with it.
yours is yours and only you will live with it and I sure hope for every reader, it will stay a choice between ticking the top or the lower part of the poll and not a real life choice.
blessings
Ronit
http://www.behappyinlife.com
Ronit Baras says
February 11, 2011 at 11:42 AMAlison,
You are so right.
I am sooooooooooooooooooooo fortunate it is a theoretical poll for me.
Ronit
Ronit Baras says
February 11, 2011 at 11:40 AMDaniel,
I have to say I admire you and your wife for the brave decision.
we bring kids to the world to learn to love ourselves and we can learn that regardless of our kids physical condition. There are parents that having perfectly healthy babies who do not learn that and it is wonderful that Ema were able to teach you that.
As a Special Education teacher, I had the honor to work with kids with sever disabilities and it is a different journey for the whole family.
about 17 years ago I lost two babies. One was born with a heart defect and I had no choice, he died 30 hours later. When the Cardiologist told us of his condition, she said ” we can search for a heart but he won’t survive the night” The first seconds she said that his heart is in a bad condition, I said to myself, we will find a solution, we can do it, I can do it but as she said, he did not survive the night.
About 9 month later, I lost another baby on the 32nd week of the pregnancy – cord accident.
For a long time after, I was so angry hearing people going through abortion from choice but as I had my son about 2 years later, I realized that there is nothing logic about the decisions we make and that I never had the right to judge people for their choices as they need to live with them and not me.
If someone thinks he won’t be able to survive something, who am I to tell him he must.
You are an inspiration.
Ronit
Ann says
February 6, 2011 at 8:13 PMYou don’t feel you have a “right” to tell anyone what to do yet you make a clear case here as to your thoughts on that the “right” decision is. I can not believe that you work with children with particular needs yet you find no value in their lives. I also think Naomi’s choice was quite obvious if you address her as “loosing a baby” yet she hasn’t lost a baby at all. She is pregnant and is told she isn’t going to get that “perfect” child that her child has an extra chromosome and this may me MANY things contrary to your limited explanation.
This type of thinking is what makes it so hard for individuals who choose, yes some of us do choose more than you think, to have a child with DS or other condition which doesn’t fit others idea of ‘perfect’ or ‘worthy’ children.
ronitbaras says
February 1, 2012 at 4:06 PMAnn,
I protest on the concept of “right” in making this decision. I would choose one thing and will respect everyone that chooses to keep the baby. – We all make the right choices for ourselves but have no right to use our standards to judge others.
I work with kids with special needs and find value in the life of a whole family. A child’s life is not worth more than his father, mother or siblings’ life.
You are right, she lost a belief that her child will be healthy. I am not sure “perfection” has something to do with that. Raising a child with DS is a different journey in life, not everyone is able to take that journey.
It is similar to someone who gets pregnant by accident and make a choice to have an abortion. After I lost my children, I could not understand such choice. I talked about rights and being not responsible ( how on earth can you have an accident? ) but I was wrong, Not everyone is willing to take that road and they should not be judged.
Alison says
February 5, 2011 at 9:57 PMI think it would be very hard for anyone to correctly vote on the pole as you would never be able to see where you head was at if you had to make that decision in real life.
Daniel G. says
February 5, 2011 at 4:07 AMI’m a parent of a beautiful girl with Down Syndrome, her name is Ema and she’s four.
During the pregnancy my wife and I learned that Ema had DS. After the initial shock, first thing we did was investigate and found an amazing story titled “Welcome to Holland” by Emily Perl Kingsley. You can read it here:
Right there we understood that we were in for a completely different experience, and as such, it will come with all it’s ups and downs. We also talked to doctors and reached out to parents with children with DS. We tried to gather as much info as possible… wherever it came from, positive or negative.
I’m agnostic, pro-choice and Ema is our first and only child. In a very strange way, I felt very lucky to have the opportunity to experience something different, and my gut told me that everything would be all right. So, we decided to live and enjoy this “different” experience… by the way, we are also eager to have another or more children and also jump in to that roller coaster.
I understand that not everyone would have made the same decision, and I respect that. If I don’t want people to judge me, I can’t judge others that make a different decision. I can only speak for my experience.
After fours years I can say that Ema has changed our life in so many good ways that I don’t know where to start. Bottom line, she has taught us, our family and friends to be better people… and what more can we ask from her? I know it sounds like a cliche, but it’s the truth and I don’t know how else to describe it.
Every day I wake up and I feel like the luckiest SOB… and I know I am!
Faced with a difficult decision, look for the information and mix it up with your values and your current position in life. No poll will help you. You will know, deep inside, what the best decision will be. Make it, commit to it and enjoy the ride.