Foetal Viability, Education and a "Drain on Society"

This is an important subject and article that contains some difficult ideas, but here is a conversation that we should not shy away from having. I was urged to write this by someone working in the relevant area to whom I was talking today.

Several years ago, I had a meeting with two educational psychologists (EPs) and a parent about the special needs of a child in the school in which I was teaching. The mother was late, and so I got to chatting with the EPs about the perceived increase in children with special and specific needs within the school system. The idea, anecdotally amongst society and professionals, is that the number of children with special needs (diagnosed or not) appears to be much higher now than in decades past. The question I had to them was, "Are we now better at understanding and diagnosing children with things like ADHD such that we appear to have a larger number of special needs children in the system but this is merely a reflection of 'better science', or has there been a real increase in numbers due to some societal factor?"

The answer I received from them both was unexpected.

They said, that both things were happening. But went on to add that the biggest factor in the increase of children with special needs, as far as they could work out, was from the viability of premature babies, as well as (post-natal) babies and children who decades previously wouldn't have survived.

On the face of it, advances in science have done a great job in allowing children to survive who otherwise would not have. A lot of children, in a lot of different medical contexts. This, we might think, would be fantastic.

Nothing in life is so simple.

Children who are born prematurely, for example, are often born with immediate or slow-burning developmental issues, both cognitive and physical. Now, before I get a torrent of responses along the lines of "I was a prem baby and I'm fine" or "my twins were premature and they are really thriving", hold your horses. I am, admittedly, making sweeping generalisations that cover a whole host of differing developmental issues from none at all to deeply severe.

Children are also born non-premature but with specific medical and/or cognitive issues. Then, of course, there are pregnancy issues that leave their mark, such as foetal alcohol syndrome and drug-linked problems.

The point is that, as was reported back in 2011, the link between premature babies and behavioural problems (as well as mental health problems) is very well established:

The worldwide explosion in premature births is fuelling a rise in emotional and behavioural problems, researchers say.

Premature births have risen 30 per cent in the past 30 years, thought to be the result of older mothers and rising obesity. About 50,000 babies a year are born prematurely – before 37 weeks – in England and Wales. Of these, 23,561 were born between 32 and 35 weeks in 2009.

The risks to babies born extremely premature – at less than 26 weeks – are well known, with high rates of physical disabilities and learning difficulties. Now researchers have examined those born moderately premature – at 32-35 weeks – whose numbers are increasing fastest. Babies born after 32 weeks comprise 85 per cent of all premature births.

The results showed that they had higher rates of emotional and behavioural problems at age four on all the measures used. The problems are thought to be the subtle effects of damage caused to the developing brain when the foetus is separated too early from its protective womb and subjected to the trauma of premature birth.

Boys were more likely to have problems such as aggression while girls suffered difficulties such as anxiety. Overall, babies born moderately prematurely were almost twice as likely to have emotional and/or behavioural problems as those born at full term (40 weeks).

See also here, here and here, for example.

35-39 weeks is a crucial time for brain development, and the problems are now seen as being much greater than they initially were.

This week, I have been on a three-day course to be trained on physical restraint, with the first day being about educational psychology and developmental theory. It's been fascinating. One of the leads is a Deputy Head at a special school,

Schools and children in the UK are split into several special categories, and it is worth defining these because many people are cocooned to the severity of children in the educational system and the exceptionally hard work that goes on to allow them to function and exist in society in a constructive manner. Sorry for the length of this, but it is important to understand the needs of our young people (who become adults, don't you know):

• SpLD - Specific Learning Difficulties. Pupils with specific learning difficulties have a particular difficulty in learning to read, write, spell or manipulate numbers so that their performance in these areas is below their performance in other areas.  Pupils may also have problems with short-term memory, with organisational skills and with co-ordination.  Pupils with specific learning difficulties cover the whole ability range and the severity of their impairment varies widely. e.g. dyslexia, dyscalculia, dyspraxia etc.
• MLD - Moderate Learning Difficulties. MLD pupil attainments are significantly below expected levels in most areas of the curriculum, despite appropriate interventions.  Their needs will not be able to be met by normal differentiation and the flexibilities of the National Curriculum. Pupils with moderate learning difficulties have much greater difficulty than their peers in acquiring basic literacy and numeracy skills and in understanding concepts.  They may also have associated speech and language delay, low self-esteem, low levels of concentration and under-developed social skills.
• SLD - Severe Learning Difficulty. Pupils with severe learning difficulties have significant intellectual or cognitive impairments. This has a major effect on their ability to participate in the school curriculum without support.  They may also have difficulties in mobility and co-ordination, communication and perception and the acquisition of self-help skills. Pupils with severe learning difficulties will need support in all areas of the curriculum.  They may also require teaching of self-help, independence and social skills.  Some pupils may use sign and symbols but most will be able to hold simple conversations.
• PMLD - Profound and Multiple Learning Difficulty. Pupils with profound and multiple learning difficulties have complex learning needs.  In addition to very severe learning difficulties, pupils have other significant difficulties, such as physical disabilities, sensory impairment or a severe medical condition.  Pupils require a high level of adult support, both for their learning needs and also for their personal care. They are likely to need sensory stimulation and a curriculum broken down into very small steps. Some pupils communicate by gesture, eye pointing or symbols, others by very simple language.
• BESD - Behavioural, Emotional and Social Difficulty. Pupils with behavioural, emotional and social difficulties cover the full range of ability and a continuum of severity.  Their behaviours present a barrier to learning and persist despite the implementation of an effective school behaviour policy and personal/social curriculum. This stretches from the milder inability to socially interact properly (and poor focus, anger management) to ADD/ADHD/ODD and the like, with some children not being able to function at all in social situations.
• SLCN - Speech, Language and Communication Needs. Pupils with speech, language and communication needs may have difficulty in understanding and/or making others understand information conveyed through spoken language. Their acquisition of speech and their oral language skills may be significantly behind their peers.  Their speech may be poor or unintelligible.  Pupils with speech difficulties may experience problems in articulation and the production of speech sounds. Pupils with language impairments find it hard to understand and/or use words in context.  They may use words incorrectly with inappropriate grammatical patterns, have a reduced vocabulary or find it hard to recall words and express ideas.  They may also hear or see a word but not be able to understand its meaning or have trouble getting others to understand what they are trying to say.
• ASD - Autistic Spectrum Disorder. Autistic spectrum disorder is a relatively new term which recognises that there are a number of sub-groups within the spectrum of autism.  Pupils with autistic spectrum disorder find it difficult to: understand and use non-verbal and verbal communication; understand social behaviour - which affects their ability to interact with children and adults; think and behave flexibly - which may be shown in restricted, obsessional or repetitive activities. Pupils with ASD cover the full range of ability and the severity of their impairment varies widely. Some pupils also have learning disabilities or other difficulties, making diagnosis difficult.
• VI (Visual Impairment), HI (Hearing Impairment) and MSI (Multi-Sensory Impairment). [source]

The Deputy Head I was speaking to was, twelve years ago, working at an MLD school. In that time, the MLD school he used to work at, though not due to active strategic change, has become a PMLD school. The entire school is now populated with children with much, much more profound needs than twelve years previously. As society is producing more children with such needs, there must be places for them.

The knock-on effects are really prevalent, according to him. These are the sorts of things that people don't realise. Now, for all those MLD children, who cannot succeed in mainstream, are either "included" in mainstream, (seriously affecting the educational experience of the mainstream children) or are shipped off to MLD schools further afield. What this means is that councils, and thus taxpayers, are footing a massive transport bill as, he claims, dozens of children are taxied, every single day, both ways, perhaps half an hour to an hour up the road. All of this is a reflection of the increase in viability of premature and post-natal babies, he claimed.

This is happening every day up and down the country to the tune of millions. The alternative, at massive cost as well, is to build new special schools. Either way, there is a huge financial burden to society, notwithstanding the social and, potentially, criminal costs.

Inclusion

Over the years, under the banner of inclusion, more and more children with specific and special needs of one variety or another are put through mainstream schooling. This is sold as "inclusion" - a benefit for the child in question as well as for those around them in the respective classes.

This sounds lovely in theory, but in reality, it is not a case of doing anything to benefit anyone. It is a case of cutting costs. Special schools, per pupil, are very expensive. Councils, especially in times of austerity, are having to make massive and seemingly endless cuts. So they try to educate many children who should be in special schools in mainstream.

Of course, in some cases, this inclusive approach can really work. Arguably, in many, though, no one's needs are being particularly well met.

Charlie Gard

The media had a field day with the recent Charlie Gard case. Here was a child born with mitochondrial DNA depletion syndrome (MDDS) and whom the medical authorities (NHS through the Great Ormond Street Hospital) eventually decided should be allowed to die. The parents started a legal battle with the authorities to allow him access to experimental medical practices abroad which, they argued, might sustain his life. It became an argument about quality of life, what was best for the child, and resources.

Yes, resources.

In a finite world with finite resources, we must choose how best to spend society's money. I find it ironic, or perhaps hypocritical, that many of the people who vociferously argued to defend Charlie Gard and his parents' rights (with some particular newspapers seeming to side with the parents in their reporting) would be the same people to argue for smaller taxes and government. Even Donald Trump and Mike Pence offered help, as well as the Vatican.

Who do they think pays for such expensive and hopeful healthcare? Should social healthcare cover the cost of each and every hopeful medical case such that the taxpayers are bled dry? Do we consistently raise charitable donations for every case? Where does the line get drawn, if at all?

Cost to Society

I highlight that case to bring into play ideas about social contracts, social healthcare, taxation, funding and living together with others. We all pay tax into a pot that needs to cover many costs. To take us back to the original point, in the case of premature babies, these costs are in the healthcare sector initially, but then in the education sector, children's services sector and if we extrpolate behaviour, very often the (crime and) justice sector, as well as many other connected areas.

I once caught the end of a BBC Horizon documentary that had looked at the advances in science that are leading to improved and increased viability for younger and younger foetuses. This plays into the hands, one might think, or pro-lifers who argue that we should not be able to terminate fetuses of such and such an age because, with technology, they are now viable.

That may be so, but this comes at a cost. I have been on the frontline of that cost, and the statistics bear me out. Such viability (and the documentary ended with this prickly subject and left the viewer with uncomfortable questions) causes many, many cases of development issue that lead on to cognitive and educational impairment and related behavioural issues. Many of these children require special education at a much higher cost to the taxpayer, and struggle to integrate successfully into mainstream society, causing a greater longterm cost, with many different dimensions.

The solutions to such issues are not magic wand fixes, because the basis is neural and biological. We can't throw money at a new scheme and imagine such people will be fixed. The only absolute solution to these issues is, arguably, them not being born at all.

And, enter stage right, cries of Hitlerian eugenics. No one likes having these conversations, but there must be lines drawn, surely, to enable society to function adequately. This isn't about actively killing fully grown people with developed elements of personhood, this is about deciding to allow a foetus to live with an awful lot of help, or not.

If we draw a line of viability at X weeks and say hospitals will not save foetuses earlier than this, we might imagine that 10% of these might function neurotypically in society, but is that worth it for the other 90%? Then again, the other 90% will include a whole spectrum of needs and might still bring their parents unbridled joy.

I am making those numbers up, but this is a real discussion that needs to be had. NICE (The National Institute for Health and Care Excellence) have to decide how the public purse gets spent with regard to healthcare choices in the UK. Do we spend money on this experimental drug that might prolong this group of people's lives by this much, or do we buy more of these machines that do that for those people? There are, no doubt, formulae that quantify the value of lives and quality of life. This is the sort of conversation we are having here.

Would you pay, out of your pocket, for the special educational needs of such and such a child? Would you prefer they didn't exist so you wouldn't have to? But, what if that child was yours? What if, during that problem during early pregnancy, you wanted your baby to be seen as viable and supported in life by your hospital, and thus the taxpayers in your society?What if your neurotypical and well-behaved child was having their education disrupted by five problem children in their class?

These are really tough discussions to have, and it is easy to tar the vast spectrum of premature babies (in this case) with a single, damning brush, but surely something must be done, going forward? It is not a case of doing anything different with people now alive, but it is more a case of informing decisions about trying our utmost to allow very premature foetuses to survive in hospital when perhaps we shouldn't.

And if that is the case, where and how do we draw that line? What if it was your child?