Leo the Baby with Down Syndrome: Don’t Pity but Fight for Inclusion

Many of you have seen the story about the dad who claims that his wife abandoned their baby when he was born with Down syndrome in Armenia (if you haven’t, you can click here to see it).  It is hard to know the complete story, especially as it is filtered through the media.  Samuel Forrest (the father) has raised almost $0.5M in funds since sharing his story on 1/27, which is quite impressive, but that will also cast doubt on intentions.  I certainly respect Samuel for standing up for his son, but I don’t feel that a father should be rewarded just for doing the right thing.  The funds site does say that some of the funds will go towards supporting children with Down syndrome in Armenia, but I am curious to know how much of the funds they will get.

The positive side to all of this, is the fact that there is so much media attention on this story, and that hopefully, this means there will be more positive awareness about our children with Down syndrome.  However, I am fearful that many who read this story will pity the father and pity the children who have Down syndrome as well.  This kind of perspective is not the kind I want for our child – I want inclusion, not pity.  So I would have also liked to have seen stories with how well children with Down syndrome are doing and how we need to view people with Down syndrome (and disabilities) as not that much different so that we can live in a world of inclusion, not a world where we pity or distance ourselves from those with Down syndrome or the disabled.  I would like articles like this to be viewed along side with the story to help spread awareness (click to view) about quality of life for those living with Down syndrome, including impacts on family life.  And there are so many inspirational stories of those living with Down syndrome that are blowing away stereotypes and limitations (click to view one such article).  Or increasing awareness about prenatal diagnoses with Down syndrome and having better support and giving balanced information when delivering such diagnoses.  This was an opportunity to educate and increase awareness that was missed in my opinion.

I wish people would realize that raising a child with Down syndrome can be very rewarding and that parents who abandon their child (either at birth or prenatally) may miss out on so much joy by not knowing their child.  The message shouldn’t be about attacking the one mother who abandoned her child when so many others have (again at birth or prenatally as there have been numerous cases of both) or the one father who chose to stand by his child.  The message should be why do people abandon their children with Down syndrome (or with a disability) in the first place?  And what do we think about that and what can we do about it?  I also read a story about a surrogate who refused to have an abortion (ultrasounds showed the baby had several defects including a cleft lip) when the birth parents demanded her to do so, even taking legal action to claim the baby as theirs just to turn the baby over to state authorities (click to view that story).  The birth father eventually visited the baby so it seemed to have a happy ending with a family who adopted several children with disabilities adopting her.  But were they rewarded with almost half a million dollars to do that?  No, they weren’t.  They did it because they are caring people and they felt it was the right thing to do.

So why is this story so compelling?  Because it was the father who stood by the child?  Because the child has Down syndrome?  Because the mother apparently abandoned her son and filed for divorce (the 2 sides differ on the facts surrounding this too)?  All of the above?  I’m not criticizing anyone who donated to the Forrest family, not at all.  I think compassion is one of the most powerful human emotions that differentiates man from beast.  I’m just wondering why this story is so compelling versus the others I have read where the mother won’t give up on her child but the father abandons them or something similar.

On a side note, the father set up a funds site to ask for money so that he could stay home with the baby for a year (they will get free healthcare in New Zealand).  But the skeptic in me makes me wonder how the money will be spent, although it sounds like he has hired people to help him figure out what to do with the funds.  I just feel that at some point, they should have shut the funds site down when they reached their goal and encouraged others to donate to research for Down syndrome, support groups or another related worthy cause.  Or say that over a certain dollar amount, the remainder will go to charities (some will go to Armenia to support children with Down syndrome which is good).  For $0.5M, it was too nebulous on how it was going to be spent to make me feel comfortable that it was going to be well spent.  Hopefully, they will do the right thing and donate the majority to help others and take only what is needed for Leo (the original request was for $60k).  In principal, I just find it unethical to benefit on his behalf.  I’m sure Samuel Forrest didn’t expect this kind of out pour of support.  I just hope he does the right thing with it and chooses to make a difference in the lives of others.  So if you have an urge to donate, please choose a Down syndrome group to donate to (see Resources for some sites to donate to).

But going back to the original point.  Cultures are very different around the world, but there seems to a common stigma of having a child with a disability and tends to carry a sense of fear, pity or shame with it.  Why is that and how do we change that?  I recently read a blog that someone shared on Facebook that got me thinking about this (click here to view it).  They brought up the fact that many advanced countries have high abortion rates for prenatal diagnoses for Down syndrome (the post said New Zealand’s rate is 55% and ours is much higher), and that abortion for this reason is prenatal abandonment similar to what has happened to baby Leo by his own mother.  Now, I think that kind of a blanket statement may be a little unfair as each circumstance is different, but I definitely see his point.  But would people be more willing to keep their child with Down syndrome if there wasn’t such a stigma carried with it?  It seems that in Armenia, the stigma is so strong that 98% of people abandon their baby at birth, which is legal there.  If the stigma was gone and they also had free healthcare, would that mean they would more likely keep their babies with Down syndrome?

There are probably some cases out there where the decision is made based on severe birth defects and not wanting their child to suffer, they choose to terminate.  But I argue this in a previous post that many children with Down syndrome have happy and fulfilling lives and are a blessing to their parents.  Also, many birth defects identified prenatally or at birth can be rectified through surgery.  So decisions made by parents who are not aware of this, may think they are saving themselves and their unborn child from a life of suffering, when they are potentially depriving themselves and their unborn child a life full of happy memories and much joy.  However, I know that there is so much uncertainty for those in the difficult position to make a decision about whether to terminate or not.  And with uncertainty, there usually is fear.  But I just want people to know that the outcome can be very rewarding and lead to happy lives as well.  To make the best choice for themselves, people need to be aware of the positives too.

The blog post also talks about having to break down the culture of abandonment (including abortions for prenatal diagnoses of Down syndrome) in order to have inclusion for our children with Down syndrome.  This is an interesting perspective.  Will our child with Down syndrome be truly accepted if someone looks at him or her and thinks, if I had the choice, I would never have had allowed him or her to come into the world?  Because other than the very difficult cases where chances of survival are slim, is termination based on prenatal diagnoses of Down syndrome somewhat similar to what the mother in Armenia is accused of doing?  In addition, she said (to her defense) that they don’t have healthcare or support for children with Down syndrome in Armenia.  So what does that mean in countries where there are such support programs and excellent healthcare?

Now I know that the two are not truly comparable.  People see pictures of Leo and see how cute and adorable he is.  An ultrasound picture is not as endearing.  It is harder to relate to a black and white picture of a peanut with limbs than an adorable baby with chubby cheeks.  There is also the debate on when life starts and some don’t believe that life starts until a baby is born.  It’s not a perspective that I agree with, but I can respect that the opinion exists.  Some mothers bond with their baby while they are pregnant and others it’s not until they hold their baby in their arms and for others, it may take even longer.  I happen to be the mother who bonds with their baby while pregnant so that shapes my opinion as well as having a son with Down syndrome.  It also is not easy to have a child with a disability and it comes with unique challenges that some people don’t feel they are able to handle.  However, when you have a child with Down syndrome, you tend to see the smiles, hear the laughs, feel their kisses and hugs, and not see the disability in your child.  But you know yourself best and know what kind of parent you are and could be.  Just don’t sell yourself short.  You would be amazed about how strong you are and what a better person you are for it.

I wish we could give a crystal ball to every person who has a prenatal diagnosis of Down syndrome so that they could see their child grown up and see how much they love their child.  Or even better, to physically hold their baby and get to bond with and feel how precious their child is, before making their decision to terminate.  Time and time again, I hear stories about parents who were scared of having a child with Down syndrome only to say later on, “if only I knew there was nothing to be afraid of” and that they would love their child and see them as a gift rather than a burden.  Yes, along with the “Kiwi” down under, I also hope that we will have a world of inclusion because this would mean that the stigma of Down syndrome would be less (ideally non-existent) and that would mean a better world for our children to grow up in.

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