THE RIGHT TO LIVE (The NHS and the disabled)

Member Name: carolinesite

Product:	The NHS and the disabled
Date:	22/09/00 (134 review reads)
Rating:

Advantages: Having the heart correction at birth woul dnot put a strain on the transplant list

Disadvantages: They are treated as people that are not 'whole'

What a stir Craig, a Big Brother contestant has caused. Giving his entire winnings of £70,000 to a young lady with Down syndrome in need of a heart and lung transplant.

But why could she not get it here, in her own country?

Firstly, let me explain what Down Syndrome is.

The term Down syndrome was given by a man named Langdon Down who discovered Down syndrome is caused by a person having three copies of chromosome 21 instead of two copies.

Down syndrome is also referred to by the name Trisomy 21.

Instead of a pair of chromosomes, as is found in all the other chromosomes, number 21 includes three chromosomes.

It is important to understand that all of the chromosomes of this person are normal.

It is the fact that there is an extra chromosome that causes Down syndrome.

Every cell in a person with Down syndrome will contain 47 chromosomes (with the exception of Mosaic Down syndrome) instead of 46 chromosomes.

There are many theories about how the extra chromosome causes the effects of Down syndrome but little is currently known. Research, however, is continuing and a breakthrough may provide possible treatments to lessen the effects.

There is nothing you can do to prevent Down syndrome and nothing you can do to change your odds of having a child with Down syndrome.

Down syndrome occurs in all races, in all socio-economic conditions, and in all countries. No relationship between diet or illness and Down syndrome has ever been found. The only established relationship is with maternal age. A woman is more likely to have a child with Down syndrome as she grows older with a sharp rise in risk at 35-40 years of age.

However, 80% of all children with Down syndrome are born to mothers under 35.

Many women are now able to find out if their unborn child has Down syndrome by a simple scan.

Many will recognize a person with Down syndrome by their facial
features and many are slow to learn but they all have 2 arms, 2 legs, 2 ears, 2 eyes a nose, a mouth, a brain and a heart.

They hear, they see, they feel.

They know happiness and they know sadness.

They are NOT idiots that sit rocking back and forth! They are human beings!

Roughly half of these children are born with a heart defect which leads to Eisenmengers Complex, the term used to describe the resultant effects of prolonged pulmonary hypertension in patients with uncorrected congenital heart defects, which eventually results in a reversal of the shunting of blood within the heart so that it goes from right to left which then damages the lungs, hence Jo having to have both a heart and lung transplant.

There is a small operation that can correct this defect and many parents have had to fight for this. If Jo was given this correction at birth she would not need this vital life saving operation today.

The cost of this vital operation for Jo would pay for 25 babies with Down syndrome to have the heart correction. So as you can see, prevention would have been a cheap price to pay.

My own nephew was born, like Jo with a heart defect. His parents were not even told about it until he was 9 years old let alone the fact that he could have had a correction. The doctors knew this when he was still a baby but waited for 9 years before telling them. They also told them that he would not live past 10 years old.

Sixteen years later he is still here and although loved by his family his quality of life is very poor. He cannot walk far, gets very tired and has to have oxygen every so often. He would also need a heart and lung transplant but his parents would not at this stage put him through such a trauma, something he would not have needed if the correction had been performed.

Doctors do not have the right to play 'God' with anybody's life.

Here is an extract taken from The Med
ical Code of Ethics (The Declaration of Geneva):-

"I will not permit considerations of religion, nationality, race, party politics, or social standing to intervene between my duty and my patient;

I will maintain the utmost respect for human life from its beginning even under threat and I will not use my medical knowledge contrary to the laws of humanity;

I make these promises solemnly, freely, and upon my honour."

Every human being has the right to live and have the right to be included on a transplant list. One should not be chosen over another.
Many Down Syndrome young ladies are not even given a smear test or a breast scan, something most women take for granted that it is a service we are all entitled to.

Gone are the days when Down syndrome people died at an early age. Many now live very long lives because of medicines such as Anti-Biotics and Penicillin.

Many things are organized into a queuing system and medical treatment should be no different.

HUMAN RIGHTS ACT - ARTICLE 2 says:-

"The right to life - everyone's right to life shall be protected by law. No one shall be deprived of his life intentionally".

(This does not include people sentenced to death in a court)



There would be no arguments today about transplants and no outcry as to whom should have what if these children were given that simple correction enabling them to have a long quality lease of life.

Where does the money come from I hear you ask. The NHS is strained enough as it is.

While this is true, the government has the power to inject more money into the NHS. After all, when there is severe famine or flooding in other countries this country soon finds the funds to help out, helping to save many lives.

And when there is a tyrant causing suffering to his people in another country, this country can yet again find the funds for aid and spend billi
ons of tax payers money on bombs that nearly all missed the target!

Where does all this money come from? I say charity must start at home.

These operations are not that expensive. They are life savers and they are needed but most importantly, they are NOT 'wasted' as some doctors are saying.

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UPDATE 29/09/00

I am very pleased to hear that the NHS are now going to do a complete U-turn on their policy regarding Down syndrome people.
All children born with Down syndrome will now have heart scans and if necessary, as is the case for about half, they will receive a heart correction operation.
This, as I have said above, will save the NHS money in the long run as these children will grow up without the need of a heart and lung transplant.

Doctors are also being told that they must treat Down syndrome people with respect and treat them as human beings and not somebody that 'looks different'.

Another exciting breakthrough is the fact that they have offered to give Jo her needed heart and lungs operation on the NHS and all money collected by the newspapers and of course Craig, will now go to the 'Down Syndrome Association'and they will use the money for training purposes.
I think Jo will be better off having the operation here, causing her less stress through travelling and we also have one of the best heart units right here in England!

I am still slightly dubious at the news but time will tell and all the people that have been fighting for this will not give up until results have been produced.

Good luck to Jo, all Down syndrome babies and also to the people that fought so hard for this.

Unfortunately it has come too late for some, but at least they helped the fight and will not be forgotten.

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