This is always a difficult topic to discuss, but it is important for parents to be aware that a claim against a hospital trust following the birth of a child with Down Syndrome is based on the fact that if the parents been told about the likely diagnosis, they would have chosen to terminate the pregnancy. In law, this is known as a claim for the wrongful birth of a child.
A wrongful birth claim looks to compensate parents for the additional costs of raising a child with additional needs whom they would not have chosen to have if they had been given all the necessary information. It applies to Down Syndrome as well as other fetal abnormalities such a missing limbs or other problems that could have been picked up through proper antenatal screening.
Thankfully, life expectancy and the quality of life for children with Down Syndrome has improved which means children often live long and fulfilled lives. However, depending on how severely the person is affected, they may need lifelong care or may never be able to live independently. The cost of such care is included in a claim where it can shown that antenatal screening was incorrectly done and the parents lost the opportunity to make an informed decision about continuing with a pregnancy.
Every case of wrongful birth is different, but a successful claim depends on showing that the hospital failed to give the correct advice about the health of a 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 the decision to have further testing is not taken lightly.
To be able to succeed in a claim, you would 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 the case as your decision may have depended on how far into the pregnancy you had come, or your religious and moral beliefs.
In terms of screening, generally an expectant mother has scans at around 12 and 20 weeks. Further genetic tests are offered to assess the risk for, amongst other things, Down Syndrome and she might be told she is at high risk of having an affected baby, perhaps due to her age or other factors.
If that result shows a high risk, there a further non-invasive pre-natal test (sometimes called the Harmony Test) that may be available which provides more specific information about the likelihood of Down 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 any of these stages and the pregnancy continues without the parent knowing the risk that their baby is affected or they might come to know very late in the pregnancy beyond the 20 week scan. They then deliver a baby affected by Down Syndrome but and had no idea and were not prepared for the news and what to expect next.
You can read about our work pursuing Wrongful Birth claims and hear about successful claims.
If you have concerns about the management of your pregnancy or the birth of your child, you can speak to me or any of the team in confidence.
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