Ask DadPad, Health & Wellbeing, Q&A

Ask DadPad: What is Down Syndrome?

Posted on 25th March 2022

Ask DadPad, Health & Wellbeing, Q&A

Ask DadPad: What is Down Syndrome?

Posted on 25th March 2022

This week is Down Syndrome Awareness Week and Monday was #WorldDownSyndromeDay – a chance to wear #lotsofsocks to celebrate and raise awareness of Down syndrome.  We thought it would be the perfect chance to speak with friends-of-DadPad and experts-by-experience Nicola Enoch, founder of Positive About Down Syndrome (PADS), and Angie Emrys-Jones from Cornwall Down’s Syndrome Support Group to find out more about Down syndrome and add to our ‘Health and Wellbeing’ blog series to help dads-to-be or new dads wanting information.  Here’s what they told us:

 

 

What is Down syndrome?

NE: Down syndrome – also known as Down’s syndrome or Trisomy 21 – is a naturally-occurring genetic difference caused by an extra chromosome in a person’s cells (this triplication of the 21st chromosome is why 21.03 has been picked to be World Down Syndrome Day).  Babies with Down syndrome are born in every country, to parents of all ages, races, religions and backgrounds. Whilst the likelihood of having a baby with Down syndrome increases with a woman’s age, the average age of a mother with a baby with Down syndrome is 29.

It is estimated that there are approximately 47,000 people with Down syndrome in the UK, and approximately 1 in 800 babies born in the UK has DS.

How can Down syndrome affect a person?

Although people with Down syndrome share some common physical characteristics, a child with Down syndrome will look more like their family members than others who have the condition.  People with Down syndrome are unique individuals with different personalities and abilities, just like everyone else.  People with Down syndrome have some degree of learning disability which affects their ability to learn, but it does not mean that they cannot learn.  Children with Down syndrome may take longer to learn skills such as sitting, standing, walking and talking – instead, mastering them when they are ready and able.

Living with Down syndrome

Like everyone else, children with Down syndrome are entitled to a place in mainstream education, and more young people with Down syndrome now leave home, have relationships, work and lead largely independent lives.  Children and young people will receive support throughout their education, and families are eligible for financial support.

Health and wellbeing

People with Down syndrome can be more prone to some common health conditions but, like the rest of society, benefit from medical advancements and subsequently live longer and healthier lives. In the 1960s, life expectancy for someone with Down syndrome was 15 years of age; today, this has risen to 60+ and increasing.

Routine heart surgery means that those babies who require surgery generally do very well and are often home from hospital within a week.

It is worth stating that 99% of individuals with Down syndrome report being happy, and 95% of their siblings express pride in their brother or sister with Down syndrome (source)!  Furthermore, other studies show that divorce rates are significantly lower for families of children with Down syndrome compared to couples with non-disabled children and families of children with other disabilities (source), and that many families of children with Down syndrome cope positively with their change in circumstances (source).

The Down syndrome community is a diverse, vibrant and supportive network who care for and support each other from discovering baby has Down syndrome through to adulthood.

What do parents-to-be need to know about Down syndrome, in terms of antenatal tests and decisions?

NE: It is beneficial for parents-to-be to have a contemporary understanding of what life looks like for people with Down syndrome in modern Britain.  There’s a lot of outdated information and attitudes around Down syndrome, so we recommend that parents-to-be take a look at publications such as Positive About Down Syndrome’s book #NobodyToldMe: The truth about Down syndrome, and follow parents of and people with Down syndrome on social media (see below for some ideas on who to follow).

Does a ‘positive test’ mean that you will definitely have a baby with Down syndrome?

NE: The only tests that are diagnostic (100% definite) are amniocentesis or CVS (chorionic villus sampling).  These are both invasive tests and carry a small risk of miscarriage and infection.  All other screening tests – including NIPT (non-invasive prenatal testing) – are not diagnostic; they merely advise on the chance of having a baby with Down syndrome.

You can find out more about the tests that you and your partner will be offered during pregnancy to screen for Down syndrome and other conditions here.

Are all babies with Down syndrome identified prior to birth?

NE: No, this is most certainly not the case.  Many parents choose not to undertake any antenatal screening for Down syndrome, and many continue with a high chance result of baby having Down syndrome and do not have a diagnostic test.  There are other babies for whom the screening results are not accurate and so baby is not identified as having Down syndrome until they are born.

What advice would you offer to a dad-to-be or a new dad who finds out that his baby has or may have Down syndrome?

AEJ: Don’t be tempted to rush too far ahead with imagined scenarios.  Instead, pause and reflect, taking the time you need to process the information.  Talk to others who are or who have been in your shoes by accessing the PADS network.  Above all, DON’T GOOGLE!

Nicola has forwarded to us some quotes from some of the PADS dads, to add further advice and support for others in the same position as them:

We found out that Alice has Down syndrome when she was born and, whilst our life isn’t always easy, our daughter is funny, loving and kind. My top tip for new and expectant parents is to take your time, enjoy your child, love them and learn from them. You can read pages and pages of information, hear negative language and be bombarded by negative press from medical professionals; however, the best person to learn from is your child. Learn to take life at their pace, to not sweat the small stuff and to take each day and its challenges one at a time. Speak to people who have lived through what you are going through – they are the expert on their child, not the medical professionals!

Leigh – Dad to Alice (6)

My son was always going to be called Lennon from the moment I knew he was coming into this world. I had a vision of the son of my dreams, a typical little boy. I imagined playing football, hide-and-seek, teasing Mummy, getting into general father-and-son mischief, and even looking forward to our first beer together. Lennon was born with Down syndrome and guess what? We play football, hide-and-seek, tease Mummy and get up to general father-and-son mischief. That first beer is only 13 years away.

Paul – Dad to Lennon (5)

I worried what impact having a baby with Down syndrome would have on our other kids, but now she’s here, I realise there was nothing to worry about.  They all get on like a house on fire and it’s madness!  If any dad is reading this and is worried, don’t bother; you’ll be amazed how the things you worried about all go, love kicks in, and you realise you love your kid with Down syndrome just as much as the others.  And the other kids don’t see any big deal; I think they’re really proud of Ellie and how well she’s doing.

Robert – Dad to Ellie (4)

We found out, after having an amniocentesis, that our little baby had an extra chromosome. I didn’t know what to think. How disabled would my little girl be? Would she be deformed? Would she be able to do anything normal? Needless to say it scared me. We already had another child with additional needs; could we deal with another? What would our lives be like?  With me being away at this point, Emma had to deal with pressure from doctors to terminate the pregnancy; they were adamant that Jaimie would not have a fulfilling life and that the best option would be to terminate. Part of me wanted to agree with them – after all, they were the professionals and they should know what they are talking about. But after learning that, if we terminated, Emma would still have to go through with giving birth to a stillborn child, we knew that wasn’t an option. So, obviously we chose to continue with the pregnancy… Jaimie is now almost 5 and is one of the most loving children you could ever meet. She is extremely funny, sassy and makes me so proud every day. Yes, she is behind in some areas, but she is so determined and so eager to learn that we have no doubt that she will achieve everything she sets out to… I wouldn’t change a thing and I sometimes forget that she has Down syndrome at all.

Steven – Dad to Jaimie (6)

What support groups and links to key information, websites, etc would you recommend that dads of a baby with Down syndrome follow or link up with?

AEJ: New parents and parents-to-be can find a wealth of support and knowledge from the extensive PADS network on social media, and their Facebook groups in particular (see below).  Families from all walks of life share their triumphs and trepidations, cheers and challenges in equal measure – grandparents and dads particularly benefit here when seeking peer support, finding answers to their questions from others on a similar journey in real time.

Other key websites/sources of information include:

Here’s a list of other support groups, websites and social media influencers that you might also want to explore, to get you started:

What is Down Syndrome?

What support groups are available?

There are fantastic local Down syndrome support groups across the country, including the Cornwall Down’s Syndrome Support Group with which Angie is involved.  Find your nearest group via: https://downsyndromeuk.co.uk/support-groups/

What about online support?

Again, there are some amazing groups out there.  Have a look at some of these:

Key people – websites and social media to follow:

And, to finish up, here – shared with us by Nicola, using resources available from Down Syndrome UK – are some of the common myths about Down syndrome that you might come across:

Myth: Individuals with Down syndrome are always happy.

People with Down syndrome experience the same range of moods and emotions as everyone else in the population.

Myth: People with Down syndrome are all so friendly and loving.

This is a gross generalisation about what “all” people with Down syndrome are like. The assumption that all people with Down syndrome are loving and want to hug can lead to the encouragement of inappropriate social behaviour. It can also lead to strangers behaving in a way that we would not accept for typically developing children unfamiliar to them.

Myth: People with Down syndrome suffer.

Down syndrome is not a disease and people with Down syndrome do not ‘suffer’, people live with Down syndrome.

Myth: Children with Down syndrome should be educated in Special Schools.

Inclusive education benefits not only the child with Down syndrome but also leads to greater understanding about difference and diversity resulting in less prejudice within the local community and ultimately in society at large. Research shows that children with Down syndrome do better academically and socially in integrated settings.

Myth: People with Down syndrome all look the same.

While children with Down syndrome share certain physical characteristics, these will vary from child to child. A person with Down syndrome will look more like his or her close family than someone else with the condition.  He or she will also be most strongly influenced by their family and their lived experiences.

Myth: People with Down syndrome don’t live very long

This myth comes from the past, however, the average life expectancy today is increasing with many people with Down syndrome living into their 60’s and beyond.  This is largely due to the advances in medicine, particularly the ability to detect and treat heart defects, and the changes in attitudes within the medical profession.

Myth: People with Down syndrome cannot read or write.

In the past, the public perception of people with Down syndrome was that they were incapable of learning and therefore did not receive any sort of formal education. Now we know that people with Down syndrome are very capable of lifelong learning; many people with Down syndrome are visual learners so for them reading can be a particular strength.

Myth: Down syndrome is a spectrum.

People either have Down syndrome or they do not.  In line with the general population, everyone with Down syndrome has a range of different strengths and weaknesses.

Myth: You can predict the future for someone with Down syndrome.

No one knows the future for any child, a very small percentage will become brain surgeons or astronauts, the majority will lead ordinary lives and there are some people who will face various challenges. People with Down syndrome are no different—some will excel, the majority will lead full and rewarding lives, while others encounter challenges. As with all children, those born into caring families will be loved; families accept and adjust as they do with any family member who may need some extra support, time or effort.

Myth: People with Down syndrome cannot achieve normal life goals.

Every year, more young people with Down syndrome than ever before are living in the community, gaining qualifications and experience as well as succeeding in a wide variety of jobs.  People with Down syndrome date, socialise, form ongoing relationships, and get married.