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Having a Child with Edwards' Syndrome (Trisomy 18) | NHS
Understanding Edwards' Syndrome
Edwards' syndrome, also known as trisomy 18, is a serious genetic condition caused by an extra copy of chromosome 18. This additional genetic material disrupts normal development, leading to a range of severe medical and developmental issues. It is considered a rare condition, occurring in around one in every 5,000 live births in the UK.
Diagnosis and Prenatal Screening
Expectant parents may be offered screening for Edwards' syndrome as part of routine antenatal care. Tests can identify the likelihood of a baby having Edwards' syndrome and are typically conducted during the first trimester. A definitive diagnosis can be confirmed through more detailed diagnostic tests like chorionic villus sampling (CVS) or amniocentesis, which analyse fetal cells for chromosomal abnormalities.
Symptoms and Life Expectancy
Babies born with Edwards' syndrome often have a low birth weight and various physical abnormalities, such as heart defects, kidney problems, and abnormalities of the digestive tract. Intellectual disabilities and developmental delays are also common. Unfortunately, the condition is life-threatening; many infants do not survive beyond the first few weeks or months of life, with only a small number reaching their first birthday.
Medical Care and Support
The NHS provides comprehensive care and support for families affected by Edwards' syndrome. Care can include surgical interventions for heart and gastrointestinal defects, specialised feeding support, and physiotherapy to manage other symptoms. Palliative care teams are also available to ensure the child's quality of life is managed compassionately and effectively.
Emotional and Practical Support
Having a child diagnosed with Edwards' syndrome can be emotionally challenging. Support groups and counseling services are essential resources that can provide parents with emotional support and practical advice. Charitable organizations in the UK, such as SOFT UK, offer valuable information and connect families experiencing similar situations.
Planning for the Future
While Edwards' syndrome presents significant challenges, knowing what to expect and planning accordingly can help families navigate this journey. This includes regular medical appointments, early intervention programs, and seeking support networks. Discussing long-term care plans with healthcare providers and support services can ensure that the child's needs are met as they grow.
For more detailed information and resources, visit the NHS website or contact local healthcare providers and support organisations specializing in genetic conditions.
Having a Child with Edwards' Syndrome (Trisomy 18) | NHS
Understanding Edwards' Syndrome
Edwards' syndrome, also called trisomy 18, is a serious condition some children are born with. It happens because they have an extra piece of genetic material called chromosome 18. This extra material affects how the body develops and works, causing medical problems. Edwards' syndrome is rare. It happens in about 1 out of every 5,000 babies born in the UK.
Diagnosis and Prenatal Screening
Pregnant people may get tests to see if their baby has Edwards' syndrome. These tests are part of normal pregnancy care. They are done in the first few months. If the test shows a high chance of Edwards' syndrome, more tests like chorionic villus sampling (CVS) or amniocentesis may be done. These tests look closely at the baby's cells to check for extra chromosomes.
Symptoms and Life Expectancy
Babies with Edwards' syndrome may be born small and have health problems like heart and kidney issues. They may also have learning difficulties and grow more slowly. Sadly, many babies with this condition do not live long. Most babies do not live past the first few months, and only a few live to see their first birthday.
Medical Care and Support
The NHS helps families with children who have Edwards' syndrome. Doctors may do surgery to fix heart problems and give special help with feeding. Physical therapy can help with movement difficulties. Special care, called palliative care, is there to make sure the child is as comfortable as possible.
Emotional and Practical Support
Having a child with Edwards' syndrome can be very hard for families. Support groups and counseling can help with feelings and give practical advice. In the UK, groups like SOFT UK can give helpful information and connect families going through the same thing.
Planning for the Future
Knowing what to expect with Edwards' syndrome can help families make plans. This includes going to medical check-ups and joining early intervention programs. Talking to doctors and support services about long-term care can ensure your child's needs are met as they grow.
For more information and help, you can visit the NHS website or talk to local healthcare providers and support groups that know about genetic conditions.
Frequently Asked Questions
Edwards' syndrome, also known as trisomy 18, is a rare but serious genetic condition caused by an extra copy of chromosome 18 in some or all of the body's cells. This extra genetic material disrupts normal development.
Edwards' syndrome can be diagnosed during pregnancy through screening tests such as a combined test at 11 to 14 weeks, a quadruple test at 15 to 20 weeks, or a non-invasive prenatal test (NIPT). Confirmation can be done through diagnostic tests like amniocentesis or chorionic villus sampling (CVS).
Symptoms of Edwards' syndrome can include severe developmental delays, congenital heart defects, gastrointestinal abnormalities, and distinctive facial features. Babies may have low birth weight and grow more slowly.
The life expectancy for children with Edwards' syndrome is significantly shortened. Many babies with the condition die before or shortly after birth. Those who survive beyond infancy often have severe medical and developmental issues.
There is no cure for Edwards' syndrome. Treatment typically focuses on managing symptoms and providing supportive care, which may include medical interventions, physical therapy, and support for families.
Edwards' syndrome is usually not inherited. It is typically caused by a random error in cell division that results in an extra chromosome 18.
Support for families may include medical care teams, genetic counseling, palliative care services, support groups, and organisations like SOFT UK that provide resources and support for those affected by trisomy conditions.
Edwards' syndrome occurs in about 1 in 5,000 live births. It is more common in pregnancies that do not come to term.
Yes, Edwards' syndrome can often be detected before birth through screening tests and confirmed through diagnostic tests.
The most significant risk factor for Edwards' syndrome is advanced maternal age. The likelihood of having a baby with this condition increases as a woman gets older.
Screening tests estimate the likelihood of the fetus having Edwards' syndrome, while diagnostic tests provide a definitive diagnosis by examining the baby's chromosomes.
Edwards' syndrome can have a profound emotional, physical, and financial impact on families. Support from healthcare professionals, family members, and support organisations can be crucial.
There are no prenatal treatments that can correct the genetic abnormalities of Edwards' syndrome. Care focuses on monitoring the pregnancy and planning for delivery and postnatal care.
Most children with Edwards' syndrome have severe developmental delays and physical disabilities. Those who survive the first year may have complex healthcare needs and require ongoing medical support.
You can connect with other families through support groups, online forums, and charities like SOFT UK, which provide information, support, and community connections for families affected by trisomy conditions.
Edwards' syndrome is when a baby has an extra piece of DNA called chromosome 18 in their body. It's also called trisomy 18. This makes it hard for the baby's body to grow and work properly.
Edwards' syndrome is something doctors can find when a baby is still in the tummy. They use special tests to check for it. These tests can happen at different times:
- A combined test between weeks 11 and 14.
- A quadruple test between weeks 15 and 20.
- A non-invasive prenatal test (NIPT) any time after 10 weeks.
If the tests say there might be a problem, doctors will do more tests to make sure. They use tests like amniocentesis or chorionic villus sampling (CVS) to check.
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Signs of Edwards' syndrome can be:
- Big delays in learning.
- Problems with the heart when a person is born.
- Tummy issues.
- Special facial features.
- Babies might be smaller and not grow as fast.
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Children with Edwards' syndrome often do not live long. Many babies with this condition die before they are born or soon after. Babies who live longer may have serious health and learning problems.
There is no way to make Edwards' syndrome go away. Doctors help by taking care of the symptoms. This can mean using medicine, doing special exercises, and giving help to families.
Edwards' syndrome usually does not pass down from parents to children. It happens by chance when cells divide. This causes an extra piece called chromosome 18 to appear.
Families can get help from different places. Doctors and nurses can work together to care for you. You can talk to special doctors who explain genetic conditions. There are people who know how to help when someone is very sick and needs comfort care. You can meet with other families who understand what you are going through. There are groups like SOFT UK that have lots of information and are there to help families with trisomy conditions.
Edwards' syndrome happens in about 1 out of every 5,000 babies born. It happens more often in pregnancies that end early.
Yes, doctors can often find Edwards' syndrome before a baby is born. They use special tests to check for it and to make sure.
The biggest risk for Edwards' syndrome is when the mom is older. The chance of having a baby with this condition goes up as a woman gets older.
Screening tests help doctors see if the baby might have Edwards' syndrome. Diagnostic tests check the baby's chromosomes to know for sure.
Edwards' syndrome can make families feel very sad. It can also make them tired and worried about money. Help from doctors, family, and support groups can be very important.
There is no way to fix the genes that cause Edwards' syndrome before the baby is born. Doctors watch the baby and help the parents get ready for the birth and taking care of the baby after it's born.
Most children with Edwards' syndrome have trouble learning and may have problems with their bodies. Children who live past their first year might need a lot of help from doctors and nurses.
You can meet other families in support groups, online chats, and with charities like SOFT UK. These places give you information, help, and a chance to make friends with other families dealing with trisomy conditions.
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