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Congratulations! You are having a baby. Knowing your baby will be born with Down’s syndrome means you can be prepared for when your baby arrives.
We know you might have lots of questions or some things may be worrying you right now, whatever you are feeling we want you to know that we are here to support you.
We hope you find the following information and resources useful to help you learn more about having a baby with Down’s syndrome. We are here to support you in any way we can. If you would like to talk with us or need any further information or support please do get in touch via 0300 030 2121 or email familysupportservice@dsscotland.org.uk our Family Support team are based regionally across Scotland and would be happy to arrange a home visit to you if possible and can put you in touch with other families too.
You can read more information about health checks and resources to support your baby’s early development once they are born here.
“We were told at week 12 during my pregnancy that our baby had a high chance of having Down’s syndrome.
As 2 young parents at the age of 23 hearing our first baby was going to be born with Down’s syndrome we were both shocked at first- but then joy and excitement kicked in.
Our baby Maeva finally made her arrival on 7th February 2023 weighing 6lbs 10oz at 10:53am-coming a whole extra 17 days early. She amazes us every single day with her progress and commitment to achieve her milestones on her own. Her smile and laugh just brightens the day. Her dad and I cannot be any more proud of our baby girl and we can’t wait for our journey together as a family. “
What will my baby be like?
Every baby is an individual full of potential and no-one ever knows what baby will be like until they are born. Everyone who has Down’s syndrome is as unique an individual as everyone else in the population, they will have their own personality and have more in common with their families than with another person who has the condition.
What is Down’s Syndrome?
Down’s syndrome is a genetic condition caused by the presence of a full or partial third copy of chromosome 21 in the body’s cells. It is sometimes shortened to ‘Ds’ and in some other countries it’s called Down syndrome.
The word syndrome simply means a set of signs and features that are found together. This is the same for any syndrome not just Down’s syndrome.
Approximately one in every 1,000 babies worldwide is born with Down’s syndrome and in Scotland there are about 70 babies born with the condition each year. It is estimated that there are 4,500 individuals living with Down’s syndrome in Scotland today.
Everyone born with Down’s syndrome will have some level of learning disability. A learning disability affects a person’s ability to learn, it does not mean they cannot learn. Children with Down’s syndrome follow the same developmental path as all children and individuals have the same range of feelings and emotions as we all do. Most importantly, everyone who has Down’s syndrome is a unique individual, full of potential.
What causes Down’s syndrome?
Down’s syndrome usually occurs randomly at the time of conception and affects males and females alike. It is rarely hereditary and nothing either parents did before or during pregnancy can have caused it.
Inside the cells in our bodies, we all have chromosomes which contain information that make each of us unique, such as our eye colour, hair colour and height.
Most people have 46 chromosomes inside every cell of their body which go together in twenty-three pairs – at conception, babies receive 23 chromosomes from mum and 23 from dad which make up the 46 pairs.
Babies born with Down’s Syndrome have an extra full or partial copy of chromosome 21 which means they have 47 chromosomes in the cells in their body – one extra chromosome that randomly happens. It is this extra chromosome 21 that causes the characteristics of the condition and makes them extra special!
Down’s syndrome is a lifelong condition and with the right healthcare, education, positive inclusion and support individuals achieve their fullest potential and reach their 60’s, 70’s and beyond.
You can read stories from parents about their own experiences of when their baby was born and how they loved spending precious time together and getting to know each other in a booklet that was thoughtfully created for you by a group of parents who have been exactly where you are now.
Expectant ParentsNew ParentsProfessionals
A little booklet about babies
22 March 2024
This booklet is for the parents, families and friends of new babies with Down’s syndrome.
We can put you in touch with other parents should you feel that would be helpful and we have a network of ten branches across Scotland who run local parent led groups where you can meet other parents and their families
It is important to look after your physical and mental wellbeing during your pregnancy. Talk to your GP or Midwife if you have any questions about keeping yourself well before your baby is born. NHS Inform has lots of information about health and wellbeing during pregnancy.
You can access the NHS Inform information pages here.
Your health professionals are there to support you should you have any worries about your pregnancy. Most babies with Down’s syndrome are born fit and healthy and have no more health issues than any other baby. However, there are some associated health conditions that are more common in babies with Down’s syndrome which can be screened for during pregnancy and you should be offered a detailed prenatal scan to check if baby has any associated health conditions so that they can be picked up early.
We wish you a very happy pregnancy and hope that baby’s birth day is a wonderful experience.
If you would like to talk with us or need any further information or support at any time please do get in touch via 0300 030 2121 or email familysupportservice@dsscotland.org.uk
