Parents should be informed about the impact of Down’s Syndrome on families

The recent debate on abortion for anencephaly in Northern Ireland has reopened the wider debate on abortion for fetal disability.

It is worth, in this context, remaking the point that the most common disability for which babies are aborted in the UK is not anencephaly but Down's syndrome (DS).

This is usually on the basis of the perceived burden that children with DS will impose on families and the belief that the lives of disabled children are somehow not worth living. Is this justified?

Brian Skotko, a clinical fellow in genetics at Children’s Hospital Boston, published a series of three studies in the American Journal of Medical Geneticsin 2011 on the impact children with Down’s syndrome have on families (these have been previously covered on the CMF blog here and here and in this submission).

‘So many American women’ he says, ‘are getting prenatal diagnoses of Down's syndrome, and asking: “What does this mean for my family? What does this diagnosis mean for my marriage? What impact will it have on my other sons and daughters?” 

The results are incredibly revealing.

In his first study , 822 brothers and sisters were asked about their feelings and perceptions toward their sibling with Down's syndrome (DS).

More than 96% of brothers/sisters who responded to the survey indicated that they had affection toward their sibling with DS; and 94% of older siblings expressed feelings of pride. Less than 10% felt embarrassed, and less than 5% expressed a desire to trade their sibling in for another brother or sister without DS.

Among older siblings, 88% felt that they were better people because of their siblings with DS, and more than 90% planned to remain involved in their sibling's lives as they became adults. The vast majority of brothers and sisters described their relationship with their sibling with DS as positive and enhancing.

In the second study parents of children with Down's syndrome (DS) were asked how they felt about their lives. Of the 2,044 respondents, 99% reported that they loved their son or daughter; 97% were proud of them; 79% felt their outlook on life was more positive because of them; 5% felt embarrassed by them; and 4% regretted having them.

The overwhelming majority of parents surveyed reported that they were happy with their decision to have their child with DS and indicated that their sons and daughters were great sources of love and pride.

But the third study was most interesting of all as it explored the self-perceptions of children with Down’s syndrome.

Of 284 people with Down's syndrome (DS), ages 12 and older who were surveyed, nearly 99% indicated that they were happy with their lives, 97% liked who they were, and 96% liked how they looked.

Nearly 99% people with DS expressed love for their families, and 97% liked their brothers and sisters. A small percentage expressed sadness about their life.

Rebecca Taylor, writing about this research for Life News when it was first published in 2011, suggested that doctors should give the news of a Down Syndrome diagnosis with a smile saying, ‘There will be challenges but your child is nearly guaranteed to be a happy adult!’

In Britain, where abortion is permitted for fetal disability right up until birth, there were 3,968 Down’s syndrome babies aborted over the period 2002-2010 although the real number may actually be twice as high. Over 90% of all babies found to have Down’s syndrome before birth have their lives ended in this way.

One wonders what their parents were told (watch this video).

Fiona Bruce MP held a parliamentary inquiry into abortion for disability earlier this year, the findings of which were published in July.

One of its main conclusions was:

‘It should be best practice that parents are provided with practical and balanced information as soon as possible after discovery of a fetal disability and before leaving hospital so that they can make an informed choice. This should include leaflets or other information written by relevant disability groups. Parents should be offered contact with families with a child with a similar diagnosis without delay’

The quicker this recommendation is implemented the better.

There is no doubt that bringing up a child with special needs involves challenges, and yet at the very heart of the Christian gospel is the Lord Jesus who chose to lay down his life to meet our own ‘special needs’. The Apostle Paul tells us that Christ died for us ‘when we were powerless’ (Romans 5:6) and that ‘bearing one another's burdens’ is at the very heart of Christian morality (Galatians 6:1).

For Christian doctors bearing burdens involves not only providing the best medical care for the most vulnerable members of our society, but also supporting their families in the long haul, being prepared to speak out when they are being treated unjustly and doing what we can to oppose unjust and discriminatory legislation and health policy.

All of us are called in a whole variety of ways to engage in the fight for these very special people and others in a similar position of vulnerability. Let's pray that we fight these battles well.

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The Department of Health is grossly under-reporting the true number of abortions for Down's syndrome

Some of the most common congenital abnormalities accounting for abortions in England and Wales are ‘trisomies’, in which there are three copies of one particular chromosome rather than two.

The most common trisomies are Down's syndrome (trisomy 21), Edwards’ syndrome (18) and Patau syndrome (13).

But how many of each are aborted?

Well it depends very much on who you ask.

The National Down Syndrome Cytogenetic Register (NDSCR) was set up on 1 January 1989.

It holds anonymous data from all clinical cytogenetic laboratories in England and Wales of cases of Down's, Patau and Edwards syndromes diagnosed antenatally or postnatally.

Its 2010 annual report was published in December 2011 and is available here.

In 2010, 1,868 Down's syndrome diagnoses were made, 1,188 (64%) prenatally and 680 (36%) postnatally.

Of the 1,188 babies diagnosed prenatally 942 were aborted, 25 miscarried or were stillborn, 52 were born alive and in 167 the outcome was unknown.

Of the 466 babies diagnosed prenatally with Edwards’ syndrome 344 were aborted. Of those 191 babies diagnosed prenatally with Patau syndrome 151 were aborted.

So in total, according to the NDSCR, there were at least 942 babies with Down's syndrome, 344 with Edwards’ syndrome and 151 with Patau syndrome aborted in 2010.

This gives us an overall total of at least 1,437 abortions of babies with one of the three conditions. I say ‘at least’ because the NDSCR estimates that a substantial proportion of those babies with trisomy with ‘unknown’ outcomes were also aborted.

But if we go to the Department of Health’s abortion statistics we get a different story altogether.

The Abortion Statistics for England and Wales in 2010 were published in May 2011 and are also available on line.

But they tell us (Table 9) that in 2010 there were only 482 abortions for Down's syndrome, 164 for Edwards syndrome and 51 for Patau’s syndrome. Together these made up 30% of the 2,290 abortions carried out for congenital abnormalities (ground E) in that year. But the total with one of these three conditions is only 697.

The disparities are astounding. 740 babies aborted with one of the three trisomy conditions, or 51.5% of the NDSCR’s total of 1,437, were apparently not reported by the Department of Health. For Down's syndrome 460 out of 942, or 49%, were not reported.

If the NDSCR statistics are accurate, and there is no reason to doubt them, then this means that the Department of Health is being notified about less than half of the abortions carried out for trisomy 13, 18 or 21.

Does this mean that doctors are knowingly falsifying abortion certification forms by neglecting to put down the true diagnosis for babies with congenital abnormalities? Or are they perhaps, possibly even deliberately, mis-classifying them as abortions on mental health grounds? Or are they just not bothering to report at all?

Is this possibly even evidence of a failure of abortion reporting on a much greater scale?

Might this be an under-reporting problem that goes much beyond babies with trisomy conditions?

Might it actually be that only half of all abortions for any fetal abnormality are being reported?

Is it even possible that this degree of under-reporting operates across other categories of abortion, perhaps even all categories? In other words might the Department of Health figures be grossly under-reporting the total number of abortions in England in Wales?

Whatever the truth of the matter is, the disparities in the figures are alarming and need to be investigated urgently.

Sadly, some people believe that the lives of people with disabilities are not worth living or that they constitute too much of a burden on society for them to be allowed to live.

It now appears that some doctors believe that their deaths are not worth recording either, even when it is illegal not to do so.

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Response to Daily Mail article on abortion of IVF babies for Down’s syndrome reveals frightening attitudes to disability

There is an article in the Daily Mail today reporting on the incidence of abortion for Down’s syndrome in IVF pregnancies.

Statistics show that in 2009, the most recent year for which figures are available, a total of 127 abortions were carried out on babies conceived through IVF-type assistance.

The data held by the Human Fertilisation and Embryology Authority shows that Down's syndrome was the most commonly given reason for an abortion, cited in 31 of the cases – three times as many as in 1999.

Foetal abnormality was the next biggest reason for abortion, accounting for 19 cases, while 15 babies with Edward's syndrome – another condition caused by the presence of an extra chromosome – were also terminated.

As it is not mandatory for reasons for terminations to be recorded, the number could be higher. No reason was given in 22 cases. Between 2005 and 2009, some 123 foetuses with Down's were terminated.

This is not new information and in many ways is not surprising.

As I have noted before, the number of babies being conceived who have Down's Syndrome is increasing dramatically.

There were 1,067 babies with Down’s syndrome conceived in England and Wales in 1989 but by 2009 this had risen to 1,887, mainly due to the fact that women are delaying having children until an age when the risk of having a child with this condition is higher.

But despite this the number of Down's Syndrome babies born alive each year has actually gone up only very slightly from 730 to around 753 over the same period. This is because our society is increasingly taking the view that it is better if children with this condition are not born at all.

In 1989 there were only about 300 abortions for Down’s Syndrome but by 2009 1,171 babies with Down's Syndrome were diagnosed before birth, 62% of the total, and 92% of these were aborted. The number of abortions would have been much higher if more had been diagnosed before birth.

The reasons people are choosing to abort are very clear from readers’ reactions to the comments on the Daily Mail online page.

If you arrange the replies from the most popular down, then the most popular post (currently with 540 thumbs up) reads as follows:

‘It's not selfish to prevent a lifetime of pain, misery and social rejection. Not to mention the psychological damage those with Down's Syndrome experience. It must be a very tough decision for the mothers so the added pressure and guilt-tripping does not help.’

The third highest (with 427) reads:

‘Why is this a news story? I don't think anyone would 'choose' to have a child with a disability of any type if they had a choice. Survival of the fittest should dominate anyway. Red arrow away, but I'm saying what most people think.’

By contrast that which has attracted the most opposition (with 246 thumbs down) says:

‘These women are the result of the 'me me me' consumerist society - where nobody apparently, should be forced to get outside of their comfort zone - in case it makes them 'feel bad'. It's an utterly disgraceful stat - and eugenics is not too harsh a word to use.’

It is signed ‘mother of three, Dubai’. The 4th and 5th least popular (at -57 and -32) read ‘Do you expect any better of western women today? I don't’ and ‘So these couples are desperate to have a baby - only perfect little ones though please. Try adopting you selfish lot’

Of course some children with Down’s syndrome do have associated disabilities such as heart or gut defects which may require surgery to fix. And some children (both with and without Down’s syndrome!) can be a real challenge to manage.

But the responses are in my view frighteningly indicative of a growing intolerance of disability in our society and do not bode well for the future.

They also display a huge degree of ignorance. Does Down’s syndrome really condemn one to a life of ‘pain, misery, social rejection and psychological damage’? Perhaps in a small minority of cases these may occur but many children and adults with Down’s syndrome are in fact very happy and fulfilled. The tragedy is that these ill-informed prejudices will only increase as people with Down’s fall in number with more effective pre-natal ‘screening’ tests.

There is no doubt that bringing up a child with special needs involves substantial emotional and financial cost, and yet at the very heart of the Christian gospel is the Lord Jesus who chose to lay down his life to meet our own 'special needs'. The Apostle Paul tells us that Christ died for us 'when we were powerless' (Romans 5:6) and that 'bearing one another's burdens' is at the very heart of Christian morality (Galatians 6:1).

For Christian doctors bearing burdens involves not only providing the best medical care for the most vulnerable members of our society, but also supporting their families in the long haul, being prepared to speak out when they are being treated unjustly and doing what we can to oppose unjust and discriminatory legislation and health policy.

All of us are called in a whole variety of ways to engage in the fight for these very special people and others in a similar position of vulnerability. Let's pray that we fight these battles well.

[Picture shows Down's Syndrome performer Hu Yizhou from the China Disabled Peoples Performing Art Troupe conducting at a rehearsal for a concert in Seoul in this March 2004 photo. REUTERS/You Sung-Ho]

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Abortion for Down’s Syndrome – tragic story, review of trends and personal reflections

There was a tragic story in the Daily Mail yesterday titled ‘Having an amnio test ruined my life’.

It relates the testimony of Marie Ideson who was coerced by doctors into having an abortion for her 16 week old baby with Down’s Syndrome, a decision she now bitterly regrets. The incident led eventually not just to ongoing unresolved grief but also to the destruction of her marriage.

Down's syndrome screening has been around for a long time and relies on a variety of screening tests including ultrasound. Cases are then confirmed by the invasive tests of chorion villus biopsy and amniocentesis at 8 and 18 weeks gestation respectively.

Currently only pregnancies at high risk for Down’s Syndrome are screened (those involving older women) but I have blogged earlier about how new prenatal screening tests are making the elimination of all people with genetic disease ‘an achievable reality’.

Cell-free fetal DNA is DNA from the baby that has crossed the placenta into the mother’s blood. It makes up about 10% of all free DNA in the maternal blood and can now be examined to determine the baby’s sex and what genetic disorders it carries. It is extremely accurate but currently expensive. However the cost is expected to come down very rapidly in the near future.

Recently revealed statistics showed that between 2002 and 2010 there were 17,983 abortions of disabled babies. The overwhelming majority of these were for conditions compatible with life outside the womb and 1,189 babies were aborted after 24 weeks, the accepted age of viability.

The 17,983 included 26 for babies with cleft lips or palates and another 27 with ‘congenital malformations of the ear, eye, face or neck’, which can include problems such as having glaucoma or being born with an ear missing.

Over the period 2002-2010 there were altogether 3,968 Down’s syndrome babies aborted and now over 90% of all babies found to have Down’s syndrome before birth have their lives ended in this way.

The problem is that increasingly many people, including doctors, believe that all babies with conditions like Down’s syndrome should be aborted and, as in the case described, this can lead to a huge amount of pressure being placed on parents to choose an abortion. These attitudes are not new and have extended to infanticide in some contexts. Witnessing one of these cases myself had a profound effect on me.

When I was a final year medical student a baby was admitted onto the paediatric surgical ward with duodenal atresia. A relatively straightforward operation would have saved her but, because she had Down's Syndrome, her parents opted not to treat. She was left alone in a side room, given large doses of morphine and effectively starved and dehydrated to death.

Some years later, when I was a senior registrar in general surgery, a woman in her 50s (again with Down's Syndrome) presented with obstructive jaundice secondary to a tumour of the Ampulla of Vater. The necessary Whipple's procedure, which involves removing duodenum, gall bladder, bile duct and half the pancreas, was a major undertaking, but there was no question in the minds of her family that she should receive the best care available. In fact she tolerated the procedure well and made an excellent recovery.

I have often reflected on these two cases and the different attitudes of the families involved. But treatment decisions like these may be consigned to history very shortly if current trends continue.

The number of Down's Syndrome pregnancies is increasing. There were 1,067 in England and Wales in 1989 but by 2009 this had risen to 1,887, mainly due to the fact that women are delaying having children until an age when the risk of having a child with this condition is higher.

But despite this the number of Down's Syndrome babies born alive each year has actually gone up only very slightly from 730 to around 753 over the same period. This is because our society is increasingly taking the view that it is better if children with this condition are not born at all. In 1989 there were only about 300 abortions for Down’s Syndrome but by 2009 1,171 babies with Down's Syndrome were diagnosed before birth, 62% of the total, and 92% of these were aborted. The number of abortions would have been much higher if more had been diagnosed before birth.

There is no doubt that bringing up a child with special needs involves substantial emotional and financial cost, and yet at the very heart of the Christian gospel is the Lord Jesus who chose to lay down his life to meet our own 'special needs'. The Apostle Paul tells us that Christ died for us 'when we were powerless' (Romans 5:6) and that 'bearing one another's burdens' is at the very heart of Christian morality (Galatians 6:1). For Christian doctors bearing burdens involves not only providing the best medical care for the most vulnerable members of our society, but also supporting their families in the long haul, being prepared to speak out when they are being treated unjustly and doing what we can to oppose unjust and discriminatory legislation and health policy.

All of us are called in a whole variety of ways to engage in the fight for these very special people and others in a similar position of vulnerability. Let's pray that we fight these battles well.

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