Tuesday, 9 July 2013

Looking back, looking forward.

I was looking at a few things tonight and I thought it was worth posting this.

I recently heard some horrific things about abortion post 20 weeks and how it can be performed and I couldn't help but think that no mother would subject her foetus to that kind of death,  no matter what its health concerns and prognosis. It was so distressing to me I'm not going to detail it here. If you really want to know, I'm sure you can find out.

It's a rare parent of a child with Trisomy 21 thesedays who would consider abortion. Thesedays it's those who decline the genetic screening because they wouldn't abort under any circumstances or those who choose to go ahead with their pregnancy despite their increased risk or diagnosis who deliver babies with Trisomy 21, excepting that very small percentage who have a false negative.

There are a few things that bother me about the whole genetic screening process.

Firstly, that there seems to be a push from inside the medical profession to find and terminate all pregnancies of babies with Trisomy 21. The attitude of the GP who thought I didn't understand the reason for genetic testing when I said I didn't see the point is indicative of a line out there coming from somewhere that it's a helpful service that we would all of course want to take advantage of. (Not so.)

Secondly, when a person receives a diagnosis or an increased 'risk' (or more appropriately 'likelihood') of a Trisomy 21 diagnosis, they are referred for 'genetic counselling'. According to reports from those on the facebook groups of which I am a member, many of these sessions amount to bullying from medical practitioners or genetic counsellors who try to convince the mother/parents that they are doing somebody a disservice (the baby, themselves, society) by carrying their baby to term and delivering as planned. Sometimes the patient's own practitioner keeps bringing it up, visit after visit, well after the 20 week mark. (A baby can survive at 22 weeks, I know of one who did, not sure exactly how early is the earliest baby to survive ever.)

The information given to these parents is not balanced or correct. They are given a bleak picture of a hopeless, 'mentally retarded' (meant as mentally slowed, not as a derogatory term, but thesedays insulting nonetheless), utterly dependent social outcast who will be a burden to all those around him for the rest of his days and who will either be plagued with illness and die early or outlive his parents which creates the worry of who will look after him when they're gone.

Maybe once that was a real picture, but not anymore. The achievements of adults out there who live satisfying lives despite their triplicate of chromosome 21 are mounting. When a person owns his own successful business I don't think we can call him a burden.  A University would not risk their good name by bestowing an honorary PhD on somebody who was mentally deficient. Adults all over the world who carry Trisomy 21 are out there commanding the respect of their peers, despite the way they look, as are 'disabled' people of all kinds, worldwide.

The even more brilliant thing is that the therapies available now are the best that have ever been. There has never been a better time to welcome a child with Trisomy 21. If ever there was a time to be scared, which mothers of children or adults with Trisomy 21 will tell you there never was and they wish someone had told them that at the beginning, now is not that time. You can expect hard work, but a child born today with Trisomy 21 has so much opportunity to live a rich and full life as do we all - and yet not all of us manage that.

The information given to expectant parents should be balanced. They should have the opportunity to meet parents of babies or children with Trisomy 21 and adults who have the condition.

Next, the wording of the whole experience needs to be thrown out.

There is no 'risk' of Trisomy 21. There is a chance or a likelihood. Like there is a 'risk' of brown eyes.

Down syndrome is a dying term as medical professionals realise that it's a stigmatising label which doesn't help to treat the individual symptoms. It's Trisomy 21. They don't even know what the chromosome does, since the symptoms are so varied between individuals.

You terminate a pregnancy, you abort a foetus, or an embryo. You don't abort a pregnancy.

It's not pro-life or pro-choice. Choice and life are not opposites. It's pro-abortion or anti-abortion but even those points of view are rarely black and white.
(Pro-life or anti-life is a bit silly)
Let's not be weaklings about this subject. If a person is willing to end a foetus' life, call a foetus a foetus and an abortion an abortion. Don't say you're aborting a pregnancy because you're pro-choice. It's a grisly, horrible business. Doctors don't enjoy it. Mothers don't either. Let's have some guts one way or the other rather than glossing over the grim bits with euphemisms designed to make mothers feel less responsible by engaging in a very blurry act. I am not saying it is wrong here, I am saying that we need to confront what we are doing. We're dealing with life or death.

When the idea of having a child with Down syndrome entered my thoughts, it was because of a couple of anomalies in my ultrasound report. It made sense to me that if I had polyhydramnios and renal pelvis dilation in the foetus it was more likely than not that the cause for both would be the one thing. I googled.  I found a medical article in a sea of not much which mentioned briefly that it could be a soft sign for Trisomy 21. (A soft sign is also called a marker)

The thought of my baby having this condition was unthinkable. I could not imagine it. I knew two people with the condition. One, a lady in her 40s lived a happy life but to be honest, did not command a great deal of respect from those I knew who knew her, including me. The other, a 6 year-old boy, was highly regarded by friends, family and strangers who knew of him. I knew it would not be terrible, but still I found the prospect scary.

When the surprise came I just went with what I knew, which was the modern version. I knew it wasn't hopeless, but that it was going to be hard work.  I didn't expect how much it was going to change my life for the better. I didn't expect the rewards to be so great. There are so many soppy things out there about how a person's child with Down syndrome is their greatest treasure and how they have a smile that lights up their life 100 times a day. I honestly thought these people were deluded and creating a lie that they could snuggle up in and live in their own little fantasy world telling themselves that it was going to be alright, over and over again.

Here's what I've learnt so far.
My child is beautiful. Regardless of her Trisomy 21-related physical characteristics, she's a cute baby and she gets comments wherever we go. (No cries of 'Dear God, what IS that THING?' from anyone so far.) Aside from her face, she's a beautiful being who is very loving and so very understanding and patient. (And 'they' are not 'all that way')

The rewards really are that great.
Over the last six months I have been privileged enough to meet scores of other parents who are all bringing up children with Trisomy 21. They are for the most part the loveliest group of people I have met and the groups feel like family.
I have been introduced to therapies that can help not only my youngest daughter, but my older two and my husband too, with seizures, sleep walking, repeated tripping, hypersensitive hearing, reading problems....
I have experienced one of the extreme ends of life in the hospital with other parents of sick children and I have been privileged to access a new perspective on life. As it is when you have children and realise that life's not all about you, when you have children whose needs are extreme, you further realise that what's most important is that they are alive, then their ability to approximate normal and anything further than that is theirs to achieve if they want, not if you want.
Maybe it's just me, but I have also regained the ability to see the person inside the 'disabled' body, regardless of how they look. This means that so much more of the world is open to me and I feel much more comfortable in life.
I also appreciate that my lot in life is so much easier than that of a relative whose child has cerebral palsy, for instance, or a mother whose child hates her and wants nothing to do with the family, or whose child is terminally ill.
My family is now eating much more healthily because we have to. We're likely to enjoy the benefits of this for many years to come.

Without brushing a person off with well-meaning cliches like 'they're so loving' or 'they're so well-natured' like a breed of dog, (and I heard a great line by someone the other week, 'my child is not a puppy. He is not here to fill your life with gladness' or words to that effect), it's not only just 'not that bad' to have a child with Trisomy 21, it's basically just having a normal child who looks a bit Asian and has some developmental delays, maybe a speech impediment - which is really not that unusual!! (And possibly some other medical problems, but they're not insurmountable.) Any inbuilt negative reaction society has to people with Trisomy 21 are ours as a society to change, and this will happen over time, as more and more adults with the condition appear out and about living their lives, working alongside us and commanding our respect.

The things I was reading tonight were comments made by pregnant women on forums who had seen the very same markers as I'd seen and had been told it could indicate a chromosome disorder but not which one - odd. They were freaking out at the prospect of a sick child and looking for stories that it could be normal, which was what I looked for. I looked for ways in which it could turn out normal.
If it had, I guess life would be simpler, but looking back and looking forward, I'd be giving up more if I had the same old normal scenario. I'd be living a life with less challenge. Is that what we really want?

I really think that if an expectant mother was given a true picture of life with a child who has Trisomy 21, she would think even longer and harder about ending the life of her foetus. I suspect that many more would choose to forge ahead and see what life would bring. It is not my place to judge anyone for their decisions and I do not presume to, but I do think that a truly informed decision would be a different one to a partially informed and biased one.

I also think that if I was in charge of genetic counselling, I'd just get the parents to google the following phrase: "I regret having my child with Down syndrome".

That is all.

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