A future caring for a baby with Down's Syndrome is bound to seem daunting, but with the right medical care and support, many children thrive and lead very full and happy lives.
What is it?
Down's Syndrome is a genetic disorder thought to affect approximately one baby in every 1,000 born. While babies are usually born with 23 pairs of chromosomes, babies with Down's Syndrome have an extra copy of 'chromosome 21' in every cell, and this leads to a variety of physical and mental characteristics. Down's Syndrome affects babies of all races and ethnicities.
If you had the diagnostic test when you were pregnant, you might have known your baby had Down's Syndrome before they were born. However, if you only had a screening test, which suggests likelihood rather than certainty, you might not have been expecting it. Either way, when your baby arrives, Down's Syndrome will be confirmed with a test for the extra chromosome.
Of course, babies with Down's look like their mummies and daddies, but there are some physical characteristics commonly shared by babies with the syndrome. These can include eyes which slant upwards and outwards, a small mouth, ears, hands and feet, and a flatter head than normal. Babies with Down's Syndrome are also prone to poor muscle tone and loose ligaments, which make them a bit floppier than other babies (they will gain more strength as they grow), and they have a deep crease running across the palms of their hands.
All babies with Down's Syndrome will have a learning disability, although the level of that can not be gauged at birth, and they are likely to have delayed physical, language and motor development. Like all babies, those with Down's Syndrome do things at their own pace - they will get there in their own time.
There are some health issues which affect babies with Down's Syndrome more than other babies too. These include: hearing and eyesight problems, congenital heart disease, problems with joints and bones, lung disorders, problems with digestion and an increased susceptibility to infections.
Every baby is different - some children with Down's Syndrome will suffer more with some symptoms than others and vice versa. The important thing to remember is that, while there is no cure for Down's Syndrome, unlike generations past, the prognosis for babies these days is really very good. Many children with Down's Syndrome do well at mainstream schools and many adults thrive well into their 50s and beyond, enjoying very happy and fulfilling lives.
For now, it's a case of ensuring sufficient care and support - for both your little one, and for you.
What can I do?
When your baby is diagnosed with Down's Syndrome, you should be offered lots of help from a team of health professionals. The early intervention programme is designed specifically to offer support to babies and children until the age of five - your GP will give you all the information you need.
Your baby will be monitored more than other babies, by a large team including specialist doctors, nurses, physiotherapists and social workers (and, later, other therapists who will offer support with language and personal development). Some babies, for example those who have more severe problems with their heart or bowel, might need to have operations when they get a little older.
In terms of caring for your baby, much of day-to-day life will be just the same as it is for other parents. Your little one will need lots of cuddles and love, for you to talk and sing and read to them, and in return they will give you just as much joy as other babies give their mums and dads.
Do try to breastfeed - although babies with Down's Syndrome might find it harder to suck from the breast, because of poor muscle tone, it is a myth that all babies with Down's Syndrome can't manage it. Just like other babies, some take to breastfeeding and others don't, but breast milk can help to protect your baby from infections, so it is worth persevering. The Down's Heart Group has advice for feeding generally. If you try and fail with breastfeeding, don't feel guilty or worried about it - many mums encounter problems and it's not the end of the world.
It's very important, particularly if it was a shock for you to discover that your baby had Down's Syndrome, to remember it is not your fault - it is just something that happens. Many parents go through all sorts of emotions when they are coming to terms with it and, undoubtedly, the future can seem daunting, not least because it is very difficult to predict what the coming years will bring.
So, it is absolutely essential that you have support for yourself, too. The Down's Syndrome Association is a terrific source of information and help for families, and is there to answer any questions you might have. They will be able to put you in touch with a local parent support group.
Your GP will give you information about the early intervention scheme.
Visit the Down's Syndrome Association's website for information and support, or call their helpline on 0845 230 0372, Monday to Friday, between 10am and 4pm.
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