Wrongful birth is a legal term which refers to a birth of a child that was not intended, and only brought about due to negligent medical treatment which denied the parents either an opportunity to avoid pregnancy or to terminate the pregnancy. When asking the question, how does wrongful birth occur, there are several things to consider:

Failure to diagnose birth defects during antenatal screening

Failure to diagnose chromosomal abnormalities

Failure to advise of genetic risks and the need for genetic testing

Failed sterilisation procedures

Failed terminations (failed abortions)

Failure to diagnose birth defects during antenatal screening

All pregnant women are offered at least two ultrasound scans during their pregnancy.

The first scan (often called the ‘dating scan’) happens between 8 to 14 weeks of pregnancy. This is when the sonographer estimates when the baby is due. It may also include a nuchal translucency (NT) scan, which is part of the combined screening test for Down’s syndrome (see below).

The second scan is usually done between 18 to 21 weeks. It’s known as the anomaly scan and it’s used to check for structural (physical) abnormalities in the fetus that can be diagnosed before 20 weeks.

These structural abnormalities include:

Hydrocephalus I

Congenital hydrocephalus can be caused by birth defects (such as spina bifida) or as a result of a maternal infection during pregnancy, such as rubella (German measles) or mumps. Hydrocephalus is a build-up of fluid on the brain. The excess fluid puts pressure on the brain that can damage it.

Anencephaly

Anencephaly is the absence of a major portion of the brain, skull, and scalp that occurs during a baby’s development in the womb. It is a cephalic disorder that occurs when the rostral (head) end of the neural tube fails to close, usually during the fifth or sixth week of pregnancy.

Achondroplasia and other dwarfism

Achondroplasia is a common cause of dwarfism. It is thought to be associated with older fathers and in 80% of cases it’s caused by a random mutation of genes. It may also be an inherited genetic disorder.

Spina bifida

Spina bifida is a neural tube defect that can occur in a developing baby. The neural tube develops in the first month of pregnancy, eventually forming a baby’s spine and nervous system. Spina bifida is a condition where a baby’s spine has not developed properly, leaving a gap in the spine.

Myelomeningocele

A myelomeningocele is the most serious form of spinal bifida and a defect of the spine and spinal cord.

Exomphalos

Exomphalos occurs when a baby’s abdomen does not develop fully in the womb.
Usually the intestine develops inside the umbilical cord and then moves inside the abdomen a few weeks later. In exomphalos, the intestines – and sometimes other organs such as the liver – remain inside the umbilical cord but outside the abdomen. It is usually associated with other birth defects.

Gastroschisis

Gastroschisis is a type of abdominal wall defect. It occurs when a baby’s abdomen does not develop fully in the womb, causing the intestines to develop outside of the abdomen. They remain exposed at birth.

Duodenal atresia

Duodenal atresia is a condition in which the first part of the small bowel (the duodenum) has not developed as a tube and remains solid, which means that it cannot allow the passage of stomach contents. It is often associated with Down’s syndrome and other birth defects.

Hydrops fetalis

Hydrops fetalis (or fetal hydrops) is a serious condition that occurs when abnormal amounts of fluid build up in two or more body areas of a fetus or new born. It is classed as immune or non-immune and is symptom of underlying problems.

Immune hydrops fetalis is a preventable complication of a severe form of Rh incompatibility. This occurs when a mother with Rh negative blood type makes antibodies to her baby’s Rh positive blood cells. These antibodies cross the placenta and destroy a large number of red blood cells in the fetus causing total body swelling.

Up to 90% of cases of hydrops are non-immune, occurring when a disease or medical condition affects the body’s ability to manage fluid. This includes heart or lung problems, severe anemia from thalassemia or infections, and genetic or developmental problems, including Turner syndrome.

Cleft lips and palate

A cleft lip, cleft palate (or both) occurs when different areas of the face do not join together during a baby’s development in the womb (during weeks 5-9). Symptoms are a gap or split (a cleft) in the upper lip and/ or the palate (roof of the mouth). A combination of genetic and environmental factors may cause the condition, but the exact cause is not known.

Congenital heart disease

Congenital heart disease refers to a range of common birth defects that affect the heart. The exact causes are not known but some things can increase the risk of the condition, including if the child has Down’s syndrome (a genetic disorder), chromosome defects or environmental factors including maternal infections during pregnancy.

What happens if a birth defect is diagnosed?

With new technology, conditions that were typically not evident until a later date, such as cleft lips, cleft palate and congenital cardiac abnormalities, can be diagnosed during the second scan.

If a baby is diagnosed with one of these conditions, and depending on the likely prognosis and severity of the condition, the doctor will usually discuss the option of terminating the pregnancy (having an abortion).

If diagnosis of a birth defect was missed during the screenings and a termination was therefore not discussed, parents could claim for damages on wrongful birth grounds. They would need to prove that if they had received all of the relevant information, they would have terminated the pregnancy.

See Wrongful birth legal issues

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Failure to diagnose chromosomal abnormalities

At 10 to 14 weeks of pregnancy, all women in England and Wales should be offered the ‘combined screening test’ for specific chromosomal abnormalities including:

  • Down’s syndrome (Trisomy 21)
  • Edwards’ syndrome (Trisomy 18)
  • Patau’s syndrome (Trisomy 13).

If this opportunity is missed, or the mother is thought to be at high risk of having a baby with one of these syndromes, there are opportunities for further tests.

What is Down’s syndrome?

Down’s syndrome is a genetic condition caused by the presence of an extra copy of chromosome 21 in the baby’s cells. The risk of having a child with Down’s syndrome increases if the mother is older (and as she gets older), but otherwise it’s the result of a random problem that occurs when sperm or egg cells are produced. There is little a mother can do to avoid this happening.

A child with Down’s syndrome will have varying degrees of learning disability and characteristic physical features, including a below-average birth weight, almond-shaped eyes, a smaller than average mouth and loose muscle tone. In addition, some health problems are more common in people with Down’s syndrome, such as heart conditions and problems with digestive systems, hearing and vision.

There is no cure for the condition, but by accessing the right special education, therapy and support, many children and adults with Down’s can achieve healthy, fulfilled and independent lives.

What is Edwards’ syndrome?

Edwards’ syndrome is a genetic condition caused by the presence of an extra copy of chromosome 18 in the baby’s cells. It affects about 3 out of every 10,000 births in the UK. Most babies with Edwards’ syndrome will die before they are born or shortly after birth.  Some babies may survive to adulthood, although this is rare.  Babies born with Edwards’ syndrome may have serious brain abnormalities, heart problems, unusual head and facial features, growth problems and an inability to stand or walk.

What is Patau’s syndrome?

Patau’s syndrome is a genetic condition caused by the presence of an extra copy of chromosome 13 in each cell.  It affects around 2 out of 10,000 births in the UK. Most babies born with Patau’s Syndrome will die before birth or shortly after birth, although some may survive to adulthood in rare cases.  Babies born with Patau’s syndrome will have a wide range of serious problems including major brain abnormalities.  They may also have heart problems, a cleft lip and palate, growth problems, poorly formed eyes and ears, problems with their kidneys and an inability to stand or walk.

The combined screening test

Screening for Edwards’ syndrome and Patau’s syndrome was introduced to the combined screening test for Down’s syndrome in 2015 and by Spring 2016 it should be available to all pregnant women in England and Wales.

The combined screening test involves both a blood test and an ultrasound scan. Together with the mother’s age, it will indicate the likelihood of her baby carrying any one of these conditions.

From the ultrasound scan, doctors will attempt to measure the baby’s nuchal translucency (fluid at the back of its neck). Depending on the position of the baby, this is not always possible.

If the mother misses the opportunity for a combined test at 10 to 14 weeks, or the doctor was unable to measure the baby’s nuchal translucency, further tests should be offered:

  • For Down’s syndrome – a blood test called a ‘quadruple test’ at 14 to 20 weeks of pregnancy
  • For Edwards’ and Patau’s syndromes (and nine other rare conditions) a mid-pregnancy scan that checks for physical abnormalities.

Additional screening for Down’s, Edwards’ and Patau’s syndromes

The initial screening test for all three syndromes will show whether or not the mother has a higher or lower risk of having a baby with one of those conditions.  Where a mother receives a ‘higher risk’ result, additional testing is recommended.  This could include:

  • Chorionic villus sampling (CVS) – This is a diagnostic test done between 11 and 14 weeks of pregnancy which involves a fine needle being inserted through the mother’s abdomen to collect a tiny sample of tissue from the placenta. The sample is then tested for Down’s, Edwards’ or Patau’s syndromes.
  • Amniocentesis – This is a diagnostic test done at around 15 weeks of pregnancy, involving a fine needle being inserted through the mother’s abdomen to collect a small sample of amniotic fluid. The sample is then tested for Down’s, Edwards’ or Patau’s syndromes.

Both of these tests carry with them a risk of miscarriage.

Choosing to terminate the pregnancy (have an abortion)

Where Down’s, Edwards’ or Patau’s syndrome is confirmed by the diagnostic tests, the mother should be given the option of continuing with or terminating the pregnancy. This is a very difficult decision for parents to make, and support should be offered from health professionals.

If the diagnosis of Down’s, Edwards’ or Patau’s syndrome is missed because of medical negligence, and therefore the opportunity to make a decision about termination is missed, the parents may have grounds to claim for wrongful birth.

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Failure to advise of genetic risks and the need for genetic testing

The genes that we inherit from our parents not only determine some of our physical and behavioural characteristics, they can also determine whether or not we inherit certain medical conditions.

Some of these conditions occur when a child inherits a faulty version of a particular gene from one or both parents.

It is possible for a parent or both parents to be carriers of the faulty gene i.e. they do not have the condition themselves but can pass it onto their child. The chances of their child inheriting the gene – and the condition – would depend on the gene’s pattern of inheritance (autosomal recessive inheritance, autosomal recessive inheritance or X-linked inheritance). You can find out more about the ways genes are inherited at NHS Choices (Genetics).

Autosomal recessive inherited conditions include:

Cystic fibrosis

Cystic fibrosis is an inherited condition that causes mucus to gather in the lungs and digestive system. It causes a range of symptoms that reduce life expectancy, such as recurring chest infections.

Sickle cell anaemia

Sickle cell anaemia is the most serious type of inherited sickle cell disease affecting the red blood cells. It is more common in people originating from Africa, Caribbean, the Middle East, Eastern Mediterranean and Asia. The disease produces unusually shaped red blood cells that don’t live as long as healthy blood cells. Symptoms can be treated but there is no cure. These include painful episodes called sickle cell crises, an increased risk of infections and anaemia causing tiredness and shortness of breath. Sickle cell anaemia can also cause delayed growth, strokes and lung problems.

Thalassaemia

Thalassaemia is the name for a group of inherited conditions that affect haemoglobin, a substance in blood that’s used by red blood cells to carry oxygen around the body. This can make them anaemic. People with thalassaemia have too little or no haemoglobin.
It more commonly affects people originating from the Mediterranean, South Asia, Southeast Asia and the Middle East. The condition can vary in severity.

Tay-Sachs disease

Tay-Sachs disease is a rare genetic disorder that causes progressive damage to the nervous system. A baby with Tay-Sachs disease will develop symptoms before its six months old, including muscle weakness, loss of vision, loss of hearing and seizures. They will gradually lose their ability to move and usually die before they are four years old. Some forms of Tay-Sachs disease can begin later and progress less rapidly.

Autosomal dominant inherited conditions include:

Type 1 neurofibromatosis

Neurofibromatosis (type 1) is a condition caused by a genetic mutation that can be inherited or developed. It causes non-cancerous tumours to grow along your nerves, and the severity of the condition can vary from person to person. Symptoms can include coffee-coloured patches on the skin, bumps on or under the skin, and associated health problems such as learning difficulties. Sometimes it can be associated with a cancer (malignant peripheral nerve sheath tumours).

Huntingdon’s disease

Huntington’s disease is an inherited condition that damages certain nerve cells in the brain. It is progressive, which means it gets worse over time, and the person will usually die after 10 or 25 years from the time symptoms appear (usually from a secondary cause such as pneumonia or heart failure).  The condition affects movement, cognition and behaviour.

Polycystic kidney disease (autosomal dominant)

Autosomal dominant polycystic kidney disease is an inherited condition that causes cysts to develop in the kidneys. Often the cysts will not grow large enough to cause problems until the person is over 30 years of age. When this happens, symptoms include stomach pains, high blood pressure, upper urinary tract infections and kidney stones. Eventually the kidneys will stop working. There is no cure for polycystic kidney disease but medication may slow the growth of the cysts and treat symptoms. When the kidney fails, kidney dialysis or a kidney transplant is an option.

X-linked inherited conditions:

Muscular dystrophy

Muscular dystrophy is an inherited genetic condition that causes the muscles to weaken over time (it’s a progressive disorder). It is life-threatening if it affects the heart muscles and muscles used for breathing. There is no cure but many of the symptoms can be managed by treatment. It is caused by mutations (changes) in the genes responsible for muscle function and leads to increasing levels of disability.

Haemophilia

Haemophilia is an inherited condition that affects the blood’s ability to clot. Usually your blood will clot when you cut yourself, causing the bleeding to stop. Someone with haemophilia will bleed for longer because they don’t have as many clotting factors to combine with the blood cells to make it sticky.

Fragile X syndrome

Fragile X Syndrome is the most common known inherited cause of learning disabilities, affecting around 1 in 4,000 males and 1 in 8,000 females. It can cause a wide range of difficulties with learning, including social, emotional and behavioural difficulties. The condition usually causes certain facial and bodily characteristics, such as a long face, large ears and flexible joints.

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Failed sterilisation procedures

Wrongful birth cases can also arise when a sterilisation has failed.  If a couple don’t wish to conceive, they can opt for sterilisation (either the man, woman or both). For men, the procedure is called a vasectomy. The most common permanent sterilisation procedure for women is surgery that blocks or seals the fallopian tubes.

Failed vasectomy

A vasectomy is an effective and permanent form of sterilisation for men, but it’s still possible for the procedure to fail and this is not always due to medical negligence.

A vasectomy is a minor, quick operation that blocks or seals the tubes that carry the sperm from the testicles to the penis. Sealing the tubes prevents sperm from mixing with the seminal fluid that is ejaculated during sex. With no sperm in the semen, an egg cannot be fertilised.

During a vasectomy, a surgeon will remove a small section of the vas deferens, the tube that carries the sperm from each testicle. The ends of the tubes are then tied or sealed using a heat treatment.

After the operation, two semen tests are done to ensure that no semen remains in the ducts or seminal fluid. The man (or couple) should be advised to use additional contraception for up to eight weeks.

The procedure can sometimes fail because:

  • The couple failed to use contraception for up to eight weeks after the operation, as advised. Existing sperm can stay in the tubes and seminal fluid for this period.
  • Over time, one or both of the tubes (vas deferens) regrows. This can happen naturally and patients should be warned of the risk.
  • The surgeon mistakenly cuts another structure (such as a ligament) rather than the vas deferens.

When would wrongful birth apply in cases of failed vasectomy?

If the surgeon mistakenly cuts another structure rather than the vas deferens and this was not identified – or it was identified but not relayed to the patient – this is medical negligence.

If the couple then conceive a baby, and they choose not to terminate the child, then there may be grounds to claim for wrongful birth.

These types of claims are not straightforward. If the surgeon failed to cut both vas deferens, semen would still be evident in the second sperm test and the couple should have been advised to avoid unprotected sex until the sample was clear. If a patient ignored this advice, the claim would be difficult to pursue.

In a case of a sperm duct growing back naturally, claims of wrongful birth cannot be pursued if the patient was warned of this risk at the time of the procedure. If the patient was not advised of this risk, then a wrongful birth claim might be possible.

Failed female sterilisation

Female sterilisation is intended as a permanent sterilisation procedure, as opposed to a long-term or short-term contraceptive method.

It involves minor surgery to block or seal the fallopian tubes so that sperm cannot reach and therefore fertilise an egg after it’s released from either ovary. This can be done by a tubal occlusion (clipping or tying the tubes) or with fallopian implants.

A tubal occlusion blocks the fallopian tubes in a number of ways:

  • With plastic or titanium clamps
  • With silicone rings
  • By cutting the tubes and tying the ends, destroying a small section of fallopian tube.

The patient should be advised to use contraception up to, including and after surgery until the woman has her next period. This is to avoid an unwanted pregnancy. Surgeons can check that the clips are still in place using an ultrasound scan or x-ray.

It is less common for a woman to receive fallopian implants (hysteroscopic sterilisation) to block the tubes. This procedure avoids the need for a surgeon to cut into the abdomen. Instead, a narrow tube is inserted via the vagina through the neck of the womb (cervix) enabling the surgeon to deposit an implant that will eventually cause scar tissue to form on the fallopian tube and effectively block it.

In this case, a patient should be advised to refrain from unprotected sex for a further three months. The placement and effectiveness of the implants can be checked by an ultrasound scan or x-ray after this date.

Before any female sterilisation procedure, an existing pregnancy must be ruled out.

The procedure can fail for the following reasons:

  • The couple failed to use adequate contraception for the required period after the procedure, as advised (or they were not adequately advised)
  • One or both the fallopian tubes grew back after being cut and tied (very rare)
  • The clips used to block the tubes naturally worked their way off despite adequate fitting
  • The procedure was not done correctly, e.g. the clips were not fastened properly and the patient received substandard care and advice.

In the UK, 2-5 out of 1,000 women will become pregnant following a tubal occlusion and 2 out of 1,000 women will become pregnant after having fallopian implants fitted.

When would wrongful birth apply in cases of failed female sterilisation?

If female sterilisation fails and the patient has the baby, then there may be grounds to claim for wrongful birth. The claimant would need to prove that the pregnancy was the result of substandard medical care.

If the clips (sometimes referred to as Filshie clips) worked their way off the fallopian tubes, and the claimant can prove that this was due to inadequate fixing of the clips, then a claim is possible. Directly after the procedure, surgical teams will often take a picture of the clips in place to prove that they are properly fastened. They are normally placed in the mother’s medical notes.

If a baby is conceived very soon after sterilisation, it’s more likely that the clips were never applied properly in the first place. In this case, a claim may be possible.

If a baby is conceived several years after sterilisation, it could suggest that:

  • A fallopian tube has grown back naturally after being tied (no grounds to claim for wrongful birth)
  • The Filshie clips have worked their way off naturally (difficult to bring a claim for wrongful birth).

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Failed terminations (failed abortions)

All techniques used to terminate a pregnancy, especially in the first trimester, carry a small risk of failure that could lead to the fetus surviving unintentionally until 24 weeks. It would not then be possible to have a legal abortion.

Broadly speaking, there are two techniques used for terminating a pregnancy – a medical abortion (using medication) that is used up to 20 weeks of pregnancy, and a surgical termination (a small operation or procedure) that can be performed between 7 to 24 weeks of pregnancy.

Depending on the technique used and the operator’s clinical experience, the risk of a fetus surviving the procedure is:

  • Around 2.3 per 1000 for surgical abortion
  • 1-14 per 1000 for early medical abortions (performed before week 9).

The risk of failure is higher in very early pregnancies.

For abortions using suction curettage, the failure rate is three times higher when performed before 7 weeks of pregnancy than the same procedure performed at 7 to 12 weeks. It is usually only recommended that you have a suction termination (either suction curettage or vacuum aspiration) from 7 weeks.

When would wrongful birth apply in cases of failed terminations?

In cases of failed abortions (whether the result of substandard care or not), it’s unusual for the pregnancy to reach full term. If an initial termination fails, in most cases there will be a second, successful attempt.

In some rare cases it’s been known for a negligently performed abortion to fail and for the pregnancy to result in a baby.

Not every failed abortion can be attributed to medical negligence but where this can be established, and the baby is delivered, there may grounds to claim for wrongful birth.

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