NORMAL SYNDROME:  A satire
I'm very sorry, I have the results of the genetic tests and they have confirmed our suspicions that your fetus is what we call....Normal.  Some people prefer the term 'Ordinarily Challenged' or 'Normal Syndrome'. The syndrome can easily be identified by a complete lack of any interesting genetic characteristics. I know this will come as a shock to you, but you should be aware of what this is likely to mean.

If your fetus manages to survive the rest of the pregnancy and the birth, which is becoming more common these days, she or he will face some daunting challenges. Children who suffer from normalcy are prone to health and psychological problems. It is almost certain that the growing child will suffer seemingly endless streams of viruses. They will frequently damage themselves, and sometimes others, from their excessive energy.

Their relentless demands will put a strain on your existing family, and of course, your relationship with your partner will suffer, and possible end in a painful and acrimonious separation. Any children you already have, even if they also suffer from normalcy, will be jealous of the newcomer and all their extra attention. Many siblings are liable to be psychologically scarred by the new arrival.

I need hardly mention the financial consequences, although disastrous, they will be nothing compared to the emotional turmoil your life will suffer.

After a while, you may be lucky and find they can be kind and loving young children. They may find some temporary happiness in things such as music, dancing, food or playing with toys. But if they survive early childhood, a Normal child is almost certain to grow into a normal adolescent. Your years of sacrifice will be thrown back in your face as they become disobedient, wild and reckless. Unable to find happiness and contentment, they will treat you with contempt until they manage to leave home. Even then the suffering will continue as they will often return to try and extract money. They will blame you for their own faults and leave you bitter and twisted.

They may well become criminals, over a quarter of 'Normals' will have trouble with the law; many will spend time in jail. Many will have problems with alcohol or drug abuse. Normal marriages are often unhappy and short, and over half will end in divorce.

Even if they become successful, this is likely to be because of the often observed tendency of Normals towards excessive greed. The chances of them sharing their success with you are remote and they will tend to see you as an embarrassment.

I am so sorry, I am afraid that Normal Syndrome is a genetic condition that affects every cell of the body, and so is impossible to cure.

A quick update, Brett was seen by the dietician a couple of weeks ago and has now been started on SMA High Energy Milk.  He seems to be doing ok on this but we just have to be careful that he doesn't go the opposite way and start putting on too much weight,  he'll be monitered carefully to look out for this.

And now for some very very GOOD NEWS, Brett was assessed again by the Speech and Language therapist and has been started on just a tiny (pea sized) amount of baby rice once a day!  Hooray, he did brilliantly, such a clever little chap he is!!!  He has this once a day for two weeks to get used to the taste and texture of it, and we have to observe him very closely to make sure he doesn't choke on it, and then she will come back after the two weeks to assess him again and maybe increase the amount providing he has done ok!

I took Brett to be weighed today, he isn't gaining as much weight as I'd have liked him to, and in fact this week has more or less stayed the same.  We have an appointment on Tuesday with the Dietician so will be able to discuss our options with her.  Will post more about this after Tuesday.

Today there was a discussion on an email support group that I belong to about people who are tested for genetic defects whilst they are pregnant, and their reactions/fears.  One member of the group said "How naive to think there are any guarantees with any child.  I'm pretty sure Ted Bundy passed all his genetic tests..."  Another member said "Yes I am sure old Teddy B. would have passed the genetics test, the smart test, the good looking test - just not the serial killer test!"  This is so true and reminds us it's the person that counts and not their genetic make-up. 

It also reminded me of another story I read on the internet a while ago which went like this..........

"Many years ago, my father was a Jewish physician in Braunau, Austria. On a particular day, two babies had been delivered by one of his colleagues. One was a fine, healthy boy with a strong cry. His parents were extremely proud and happy. The other was a little girl, but her parents were extremely sad, for she was a mongoloid [Down syndrome] baby. I followed them both for almost fifty years. The girl grew up, living at home, and was finally destined to be the one who nursed her mother through a very long and lingering illness after a stroke. I do not remember her name. I do, however, remember the boy's name. He died in a bunker in Berlin. His name was Adolf Hitler."

The website where I read the above story said that the story "probably isn't true but that it does express a truth and that truth is that we never know what our children will become."

This discussion, and also after having a chat with one of the team who looks after Brett at the hospital about the same thing, prompted me to have a good think about how I feel about the subject.

In the short time Brett has been here we've already had our share of negative or discriminating attitudes (and even people being just plain embarrassed!) It's a sad world that everyone can't be more accepting.  So, how do I feel about genetic testing while pregnant?  Personally (and I really do think it's a personal thing!) I will never regret having the tests and am very glad that we found out about Brett's Down Syndrome while I was pregnant, it gave us lots of time to find out as much as we could and to come to terms with how our lives would change (for the better, might I add!) I won't pretend the results didn't bother us, it would be silly of me to pretend it didn't, but I think looking back it was the shock of not expecting it even though we were high risk.  Once we had got over the 'oh, that's not what we expected' factor, then the future became very easy to accept and embrace.  Brett has indeed enhanced and enriched our lives.  I think the biggest shock and fear came when we found out about Brett's heart condition, and even now it chokes me to think about that part of it and the not knowing what will happen or if he will need treatment or an operation.

Brett had another appointment with the cardiologist today, he had an ECG and Echo done and the results were pretty much the same as the last time, the plan now is that the cardiac team will decide at their weekly meeting on Friday whether they will go ahead and do a heart catheter study (I think this will be done while Brett is sedated and will involve an overnight stay) within the next two weeks or whether to wait until after his respiritory review which isn't till the end of May.  They will phone us on Friday afternoon to let us know.  His Sats were done today and they were fine at 93%.

Well we've starting to 'sign' with Brett and the first word we chose to do is 'drink'.  So, there I am signing away yesterday, doing the sign for drink and saying the word at the same time, and Gary bursts out laughing and says I remind him of Father Ted!!! So now I can't do the sign without having a fit of giggles, the speech and language therapist will think I've finally cracked up because I was in a fit of giggles last time she assessed Brett!