Saturday 21 March 2015

Guest Post: What to Say When a Baby is Born with Down’s Syndrome

I am super pleased to host this guest post for World Down's Syndrome day today from a wonderful friend of mine, Hayley Goleniowska. I met Hayley a number of years ago at one of the many blogging events we attend and within minutes I could tell she is someone I'd like to know more and we got to share a fab dinner together at the MAD blog awards in 2013. She has a gentle elegance and radiates warmth but don't underestimate her as this lady is made of tough stuff!

Hayley is the mum of two beautiful girls and her second born, Natty has Down's syndrome and due to some of the unfavourable responses Hayley has received since having Natty she is working tirelessly to help educate people and change wrong perceptions of those living with Down's syndrome.

Hayley brings her expertise on talking about Down's Syndrome for New Parents to Fink Cards where she will publish a new pack to help new parents find the early years' support they need. These cards are designed to spark important conversations at a time when perhaps people might not know what to say. For fear of saying something insensitive, some people simply say nothing when a baby has received an unexpected diagnosis of Downs’s syndrome. However here is Hayley's excellent advice:

Don’t be afraid to say something
If your words are meant with kindness saying something is always better than saying nothing at all.

Just as important as starting a conversation is the ability to listen. New parents might want to talk about their feelings, their fears and concerns or they might simply wish to chat about everyday things over a cuppa. A great source of support and friendship will be able to sit and listen.

Congratulate the family on their new arrival
Take flowers, champagne, send a card. Ask to see a photograph. Ask how much the baby weighs and what his or her name is.

In fact ask and say all the same things you would if the baby did not have Down’s syndrome.

Be realistic
I found it enormously helpful when friends acknowledged the challenges and worries that lay ahead of us, rather than glossing over them. Over-optimism can be insincere, but being positive and realistic about what all children can achieve with support is important.

Avoid outdated language and clichés
Here is a little baby who has an extra chromosome. She has Down’s syndrome and it is just a part of who she is. She will be a unique individual more like her own family than any other child with Down’s syndrome.

Offer support and help
Kind offers of help in the form of cooking a meal, washing up, looking after siblings, watching baby while mum gets some sleep are always welcome.

Practical gifts go along way too, like a hamper of wholesome snacks for parents spending hours in a neo-natal unit or a pretty coolbox to transport expressed breast milk to and from the hospital.


Hayley Goleniowska is a writer and speaker, working with parents, teachers and medical professionals as well as self-advocates who have Down’s syndrome. Her work is internationally renowned and her blog Downs Side Up has won many awards for its outstanding contribution to society. Through her many media interviews she also hopes to gently change the public’s perceptions of the condition.

Hayley and her eldest daughter Mia have recently launched a book for children, entitled I Love You Natty: A Sibling’s Introduction to Down’s Syndrome.

Hayley is passionate about increasing the support that parents receive after unexpected news, whether that comes during pregnancy or after a baby’s birth. By easing their fears and helping them to sort the facts from the myths that often surround Down’s syndrome she hopes to buy them precious quality time with their newborns. For more information visit
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