Discussing any wrongful birth case must begin with recognition of the huge emotional upheaval of bringing such a claim that generally stems from the desperation of parents supporting a child with severe disability, determined to do their best for their family.
Only people at the end of their tether would be prepared to admit – while holding a beloved and severely injured child in their arms – that had they known about the disability prenatally, they would have terminated the pregnancy.
Because this assertion is what underpins a wrongful birth claim and I genuinely believe it is something every couple choosing to attend routine prenatal scans should bear in mind before they go: if a fetal abnormality shows up, what will we decide to do?
One of the dilemmas is, of course, to bring such a case while never disrespecting those who knowingly chose to have and bring up a disabled child where abnormalities were indicated prenatally.
But the reality of advancing medical technology and the choice to engage with it is that it generates practical and ethical choices that can be extremely difficult, further compounded by the infinite love for a living child.
The case of O
In a recent case that has just settled, I represented a married couple with three children. A healthy six-year-old daughter and one-year-old son and a middle child I will call O. O is four years old and has Down's Syndrome. He is at the lower end of the spectrum for cognitive development, has a history of infantile spasms and has now been diagnosed with Autistic Spectrum Disorder.
Children who have infantile spasms are likely to continue with severe developmental impairment and autistic features and it is likely that O will remain in this group. His daily living skills are estimated as similar to a one-year-old. He is unlikely ever to be continent and will require 24 hour care for his whole life and is unlikely ever to walk more than a few steps. His life expectancy is estimated at 60.
There is a chance of epilepsy seizure recurrence which requires two carers to be managed. O can be very difficult to get to sleep, he generally wakes at least twice a night for at least 40 minutes each time and is very disruptive and noisy. He has significant behavioural problems, screams regularly, bites other people and pulls their hair. He chews cables and wood and will also scratch his skin, pull out his hair and push his fingers into his eyes. He will bang his head on the wall or floor. In legal terms, O has no earning potential and lacks capacity. He has no sense of danger.
Following her 12-week Nuchal scan in April 2014, O's mother was told that she was a 'low risk' pregnancy. At a later 20-week Fetal Anomaly Scan, a midwife detected two soft markers for Down's but following consultant review, the parents were told there was nothing to worry about.
The consultant later concluded that had the nuchal fold been correctly measured, a high risk result would have shown up and diagnostic testing offered.
Liability was admitted by the West Sussex Hospital NHS Foundation Trust for failure to diagnose O's disability. It was accepted that but for this admitted negligence, there would have been prenatal diagnosis that would have led to termination of the pregnancy at about 13 weeks and O would not have been born. The case also includes that the youngest child was conceived so that the daughter would have a sibling without disability and but for the negligence, the parents would have had two children rather than three. Nonetheless, O is of course a now loved and cherished integral member of the family.
Following O's birth, both his parents suffered substantial psychological reaction including adjustment disorder and post-natal depression by his mother. They continue to have counselling together and alone. Fundamentally, their other children suffer practically and emotionally because of the time their parents must devote to O's care. O's mother has never been able to return to work.
The law and wrongful birth
A wrongful birth claim such as O's is based on the financial costs of bringing up a severely disabled child above and beyond the normal costs of bringing up a healthy child. However, the law is in a state of flux with a trilogy of judicial authorities (McFarlane, Parkinson and Rees) at odds with each other effectively over whether having any child, harmed or not, can ever be anything but a blessing.
Our primary case was that O's parents claim was not restricted to the extra costs associated with O's disability, but also extended to the basic costs of an uninjured child. It was based on a negligent failure to advise of a disability. In the Rees case, the basis for distinguishing between recovery in a case of 'failed sterilisation' as in the Parkinson case and where parents have specifically sought medical input to avoid the birth of a child with a disability was recognised.
The defendant rejected any claim for upbringing but that if Parkinson did apply only the additional costs due to disability would be recoverable and only to O's majority when state support meant he will no longer be dependent on his parents.
Following expert assessment for current and future needs, we listed the costs of 24-hour care, including treatments, therapies, equipment and live-in carers, the costs of adapting the family home to accommodate O's special needs, loss of parental earnings, specialist education and pain and suffering of the parents. O's care will continue after the death of his parents.
The refusal of the trust initially to accept our calculations because of the present state of the law meant the case was to proceed to trial in December 2018. However at RTM in October 2018 the parties were able to agree a settlement in the sum of almost £13 million.
The relief of some of their burden is immeasurable for this family, not least knowing carers will give them all some respite and, perhaps most importantly, knowing O will be looked after even if he outlives his parents.
A complex, emotionally draining and difficult case, but one which had to proceed to secure the future of a little boy with enormous lifelong needs.
With thanks to paralegal Gabriella Gooday and PA Jane Hadfield for their relentless support to me and to the family.