Down's Syndrome: Compensation for failed antenatal screening

18 July 2019

On 8 July, the Telegraph reported that Edyta Mordel and her partner were suing the Royal Berkshire Hospital NHS Trust for the fact they had a child born with Down's Syndrome. The claim against the Trust is on the basis that had they been told about the diagnosis, they would have chosen to terminate the pregnancy. Instead they gave birth to a healthy baby boy affected by Down's.

In law, these types of cases are known as claims for the ‘wrongful birth’ of a child and the claim is for the additional costs of raising a disabled child. Thankfully the life expectation of children with Down's has increased with improvements in healthcare which means children often live long and fulfilled lives. However, depending on the severity of how the person is affected, they may require lifelong care, may not be able to take up employment (although many do) and may not be able to live independently. It means that these types of cases often result in multi million pound settlements. The Telegraph reported that the parents were “suing the NHS for £200,000” but the reality is that the claim is likely to be substantially more.

These cases are incredibly sensitive and in this blog, I set out what these claims are about and what to do if you need some advice.

What is a wrongful Birth Claim?

In short, a Wrongful Birth claim is made on the basis that prospective parents are not properly informed of the fact that antenatal screening suggests that their child will be born with a significant birth defect. If they had been told of the risks, and if they had been properly informed they would have chosen to terminate the pregnancy. In a case involving Down's Syndrome, for example, they may have been screened for Down's and the result may have been high risk. If it were high risk, the parents may then choose to have a more invasive test to confirm the diagnosis. If it is then certain that their baby is affected, they may choose to terminate at that point.


Why are these cases so sensitive?

There are many people who do not believe in terminating pregnancies and many who do not believe it is right to terminate an unborn child because the parents are aware that the baby is going to have a disability, or, in the case of Down's Syndrome, a chromosomal abnormality. A successful claim also rests on the basis that you would have chosen to not have your much loved disabled child which can be difficult for the child if they have the capacity to understand the claim, or learn of it when they are older.


How do you prove a case?

Every case of wrongful birth is very different (see my colleague Suzanne Farg's blog for further information) but in order to bring a successful claim you need to show that the hospital failed to give you the correct advice about the health of your baby. If you had been given the correct advice you may then need to show that you would have elected to take the diagnostic tests to confirm the diagnosis. Some of these tests can lead to a miscarriage so they are not taken lightly. You then need to demonstrate that, faced with the news about the health of your unborn baby, you would have chosen to terminate the pregnancy. This can sometimes be the hardest part of proving your case as your decision may have depended on how far into the pregnancy you had come, or your religious and moral beliefs. 

In the cases of a baby affected by Down's, generally a successful case is based on a scenario where:

  • A mother has a screening test between 10-14 weeks of her pregnancy and is told she at high risk of Down's Syndrome, perhaps due to her age.
  • If that result shows a high risk, there a further non-invasive pre natal test that may be available which provides more specific information about the likelihood of Down's Syndrome. It is not always available on the NHS. 
  • If the risks appear to be high, the mother can elect to have an invasive diagnostic test such as the amniocentesis or chronic vilius sampling (CVS) which will say for certain whether the baby is affected. There is an up to 1% chance of miscarriage with these tests.
  • The mother then choses to terminate her pregnancy if there is a positive result.
  • A successful claim may arise when inappropriate screening and advice is given during the above stages and the pregnancy continues without the parent being aware of the risk that their baby is affected.  They then deliver a baby affected by Down's and had no idea or any preparation for the news.

Antenatal testing is not limited to Down's and there a number of other cardiac, congenital or brain abnormalities that are also screened.


What is difficult about the case of Edyta Mordel?

Edyta Mordel gave birth to her son and reports being very upset because she believed she had been given the all-clear after screening of the unborn baby. Whilst she reports wanting screening when she first learned she was pregnant, the test was not carried out at the 12 weeks scan and the sonographer recorded "Down's screening declined" in her notes. The Trust are of the view that having learned about the risks of testing, she decided against the test, hence the note made in her records. Ms Mordel's legal team argue that the sonographer wrongly recorded Down's screening as being "declined", leading to her missing out on the testing that is available. Therefore this case is made much  more difficult because of questions being raised about the validity of the medical records and the mother’s recall of events. The Judge in this case has not yet made a decision, which is likely to be based on whose version of events is likely to be more accurate and I will provide any further views on the judgement once it is known.


What to do if you are concerned about how your pregnancy was handled and your child has a disability

It is undeniable that the additional costs, time and resources involved in bribing up a child with any disability is high. Parents work tirelessly to ensure that the needs of their children are met and they have access to what is available to help them live as independently as possible. I speak to many parents of children with disabilities who have questions surrounding their pregnancy or the birth of their babies and whether they were given the correct treatment. If you would like some advice about any of these issues, please telephone us in confidence for advice on the legal process, compensation and how this might be available for you and your  family.


About the Author

Punam Sood is a Senior Associate in the Clinical Negligence and Personal Injury Department. She has experience of a wide range of claims, including birth injury and acquired brain injury claims, claims relating to fatal accidents, those involving gynaecological injuries following childbirth and those due to the delayed diagnosis of cancer.

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