What it's like to have a baby with Edwards' syndrome - My Story - Chloe and Penelope | NHS

What is Edwards' syndrome?

Edwards' syndrome is when a baby is born with an extra chromosome.

Chromosomes are tiny parts of your body that hold genes. Genes make you who you are.

If a baby has Edwards' syndrome, it might have slow growth, a small head, and problems with organs.

Some babies with Edwards' syndrome have a hard time living a long time.

To understand better, you can use picture books or ask a helper to explain.

How many people have Edwards' syndrome?

• Look at simple books with pictures.
• Ask a doctor to explain it to you.
• Watch a video about it.

What happens if a baby has Edwards' syndrome?

Edwards' syndrome is a health problem that a baby can be born with. It can cause different signs in the baby's body.

Some things you might see are:

• Baby is very small and does not grow well.
• Baby's head is a funny shape, like an oval or long.
• Baby has clenched fists, where fingers overlap.
• Baby might have problems with their heart.
• Baby's feet might look like a rocker or have a curve.

If you think a baby might have these signs, talk to a doctor. They can help by looking after the baby's health.

Using pictures and checklists can help understand these signs better. Ask for help if you need it. It's okay to ask questions to the doctors.

What problems do parents of babies with Edwards' syndrome have?

Parents of babies with Edwards' syndrome face many problems.

• Babies might have health problems. They often need to see doctors and go to the hospital.
• Babies might need special care and attention all the time.
• It can be stressful and tiring for parents.
• Parents may feel sad or worried about their baby.
• Some parents find it helpful to talk to support groups or other families.

Using simple words and short sentences can make it easier to understand.

Parents can also use pictures and visual aids to help explain things.

How do doctors find out if a baby has Edwards' syndrome?

What help can parents get for babies with Edwards' syndrome?

If your baby has Edwards' syndrome, you can get help and support. Here are some things that might help:

• Talk to doctors and nurses. They can give you advice and answer your questions.
• Join a support group. Other parents who have babies with Edwards' syndrome can share their stories and help you.
• Look for information online. There are websites with more facts about Edwards' syndrome.
• Ask for counseling. Talking to someone can help you feel better if you're worried or sad.
• Find out if there are special programs near you. Some communities have groups to support families.

How long do babies usually live if they have Edwards' syndrome?

How can parents get ready for a baby with Edwards' syndrome?

When you are expecting a baby with Edwards' syndrome, it is important to know what to do and what to expect. Here are some tips to help you prepare:

• Learn about Edwards' syndrome: Read simple books or watch videos to understand what Edwards' syndrome is.
• Talk to doctors: Speak with doctors who can explain what care your baby might need.
• Join support groups: Meet other parents who have babies with Edwards' syndrome. They can share advice and support.
• Prepare your home: Make sure your home is safe and comfortable for your baby.
• Ask for help: Don't be afraid to ask family or friends for help when you need it.
• Use reminders: Use tools like planners or phone reminders to keep track of important appointments.

Remember, every baby is different. Take things one day at a time and reach out if you need help.

What can help a baby with Edwards' syndrome?

Edwards' syndrome is a condition that some babies are born with. It can make life hard for them. Here are some things that might help:

• Doctors' Help: Doctors can check the baby and suggest treatments. This might include medicine or special care.
• Special Care: Some babies may need to be in a hospital or special nursery to get the care they need.
• Support for Families: Families can talk to support groups to learn more and get help.

It can be helpful to listen to doctors and seek advice from people who understand Edwards' syndrome.

Using pictures, easy words, and talking to someone can help when learning about this condition.

Can Edwards' syndrome be cured or stopped?

Edwards' syndrome is also called Trisomy 18. It happens when a baby has an extra piece of a chromosome.

Right now, there is no cure for Edwards' syndrome. This means doctors cannot make it go away.

We also cannot stop it from happening before a baby is born.

Doctors can help by looking after the baby and supporting the family.

For more help, ask a doctor or nurse. They can talk to you and give you more information.

How can family and friends help parents of a baby with Edwards' syndrome?

Family and friends can help in simple ways:

• Listen: Spend time with the parents and listen to them.
• Cook meals: Make food for the family. It can help take away some stress.
• Offer help: Ask if they need help with the house or shopping.
• Be there: Sometimes just being with parents is enough.
• Give them breaks: Offer to look after any other children, so parents can rest.
• Share information: Share any useful information or resources you find.

It can also be good to use tools like:

• Visual schedules: Help parents stay organized with pictures and words.
• Support groups: Look for groups where parents can meet others with similar experiences.

Being kind and helpful can make a big difference!

What feelings might parents have after finding out their child has Edwards' syndrome?

When parents find out their child has Edwards' syndrome (a serious health condition), they might feel many different emotions. Here’s what they might feel:

• Sadness: Parents might feel very sad.
• Worry: They might worry about their child's health.
• Confusion: It can be hard to understand this news.
• Anger: Some parents may feel angry.

Here are some ways to help:

• Talk to a doctor or nurse. They can give support and explain more.
• Join a support group to talk to other parents who understand.
• Write down feelings in a notebook to keep track of them.

Remember, it is okay to ask for help and talk about feelings. Everyone deals with this in their own way, and that's okay.

How can talking to a gene expert help with Edwards' syndrome?

How do doctors in the UK take care of a pregnancy when the baby has Edwards' syndrome?

Doctors in the UK want to help mums and babies when a baby has Edwards' syndrome. Here is what they do:

• Regular Check-Ups: They see the mum often to check on her and the baby.
• Special Scans: They use special machines to look at the baby in the mum's tummy.
• Talk with Families: Doctors talk with the mum and family about the baby's health and what might happen.
• Support from Nurses: Nurses and other helpers are there to give extra help and support.

If you or someone you know is going through this, it's good to talk to the doctors and nurses. They are there to help and answer any questions. Also, using picture charts or simple apps can help understand things better.

How can parents stay hopeful and realistic with an Edwards' syndrome diagnosis?

It is important for parents to have hope but also understand what to expect with an Edwards' syndrome diagnosis.

Here are some tips for parents:

• Talk to doctors to learn about the condition.
• Connect with support groups for advice and friendship.
• Take time to care for yourself and your family.
• Ask questions if something is not clear.

Tools that may help:

• Use simple words to help understand.
• Ask for pictures or diagrams to see what things mean.
• Write down important information to remember it.