Please introduce yourself and your family and tell us a little bit about your grandchild who has Down’s syndrome?
Hi, my name is Diane Thompson and my elder son David and his partner Charlotte had Amelia on May 15th 2016. Amelia was induced 5 weeks early as they said Charlotte had only a small bump and after measuring baby thought there may be something wrong.
When did you find out that Amelia had Down’s syndrome and what did you feel when you heard the news?
Once Amelia was born at St Mary’s, Manchester she was taken to NICU where it was found she had underdeveloped lungs and several heart issues including holes, only 2 chambers and valves in wrong place.
Consultants decided she needed to be 4 months old before any operations. Some 5 days later, after testing for Down’s syndrome this was confirmed! Our family was still in shock fro the heart and lung diagnosis and Amelia was critical. My Son and his partner were very upset and myself and husband were shocked but our little angel was fighting for her life and we were willing her on.
Nothing had shown up at 20 week scan so everyone was shocked at all her problems and in our lifetime we had been sheltered from babies being ill and certainly didn’t know anything about Down’s syndrome.
Amelia had open heart surgery at Alder Hey Hospital and will need more surgery to fix leaking valves and another small hole. She also has chronic lung and is on oxygen which she has been on since birth. These are her problems, not Down’s syndrome. OK she may be slower than children without Down’s syndrome but does it matter?
She has been in hospital for roughly 17 months of her 22months and so her muscles are still weak but since coming home late August learnt to sit at Christmas. Amelia always has a smile on her face after all she has been through. She is our world. The Down’s syndrome is nothing and if my son and partner have another child would not want testing as they say it does not matter.
Amelia is learning words, can wave, cannot weight bear on legs yet but hopefully that will come and has now a standing frame to help strengthen her muscles. She cannot eat food and is fed through peg in stomach.
What does being a grandparent mean to you?
Amelia is our 8th grandchild and they are all loved unconditionally! We do worry about her but more so with her other complex health issues not because of her Down’s syndrome.
Were there any resources/groups/website/contacts that you found particularly helpful?
We were not given any info on Down’s syndrome and Amelia’s mum and dad were not given much either. There needs to be more information given from hospitals and staff need more training on how to speak to parents (well not all staff). I feel some staff are not educated enough about Down’s Syndrome.
The grandparent’s group is very helpful as you can ask questions etc. I was worried about Amelia not weight bearing on legs but from the group realise she is not alone. It is a fantastic way of asking questions I am scared to ask my son or his partner about my granddaughter Amelia. I have learnt Amelia is not on her own with all her issues and questions I have had since Amelia was born in May 2016 have now been answered. I also have been able to help other grandparents with questions. I go on the site daily. I have also been able to reassure my son and daughter-in-law that some issues Amelia has is normal to others with Down’s syndrome too.
What advice would you give new grandparents?
The advice I would give to new grandparents is “ask questions”, join groups, don’t be afraid as your new grandchild will steal your heart and to be honest we are the lucky ones.
Resources for Grandparents
Tea at Grandma’s – the third book in the Looking Up series published by the Cornwall Down’s Syndrome Group (CDSSG)
In collaboration with Helen Laverty & Positive Choices Network, CDSSG have created “Tea at Grandma’s” which focuses on the important role of the often unsung heroes that are the grandparents, who can have “double the worry” for their own child and for their grandchild when a diagnosis of Down’s syndrome is given.
It’s available to order for £3.99 (incl free UK mainland postage)
Down’s Syndrome: Grandparents Chat UK – Closed Facebook group
Launched just two months ago, this Facebook group is exclusively for grandparents of children/young people with Down’s syndrome to share experiences and offer peer support.
If you would like to join visit the group page and click the ‘Join group’ button at the top.
Down’s syndrome: A leaflet for friends & family
This leaflet has been written to give you basic information about Down’s syndrome, to provide some tips about supporting the new parents and to highlight further sources of information.
Click here to download the leaflet or give us a call on 0333 1212 300 to request a copy.
Celebrating Our Lives, Our Stories and our YouTube channel
Our Celebrating Our Lives document profiles nineteen very different young adults with Down’s syndrome and gives you a window into what their lives are like. You’ll find a pdf version on our website here.
The Our Stories section of our website includes stories from people with Down’s syndrome of all ages and you’ll find a whole range of inspiring films on our YouTube channel.
#InclusionMatters
Lastly, here’s a little treat, courtesy of Daily Dose of Bella on Facebook . Bella recently had a starring role in a McCain’s advert with her Grandma and younger brother: