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Original poster

Any Down’s Syndrome parents in Bristol?

16 replies

JoBristol · 22/07/2018 09:53

Hi 😀 My name is Jo and I live in Bristol. I’m 43 and I am 24 weeks pregnant with my 4th child. My baby was recently diagnosed with Down’s syndrome. Was wondering if there were any parents in Bristol willing to meet up for a coffee so we could have a chat about your experience.
Jo

OP posts:
Gilbert82 · 26/07/2018 21:28

Hi Jo, congratulations!
I don’t live near to you but I do have a little one with Down syndrome Smile we had a postnatal diagnosis following his birth last year. If you look on the Down syndrome association website there’s lots of information for new parents and also local support groups. There’s also a number of Facebook groups you can join. I was so surprised how much support is out there! Wishing you all the best for a healthy pregnancy and for the birth of your baby xx

BlytheofWindyWillows · 26/07/2018 21:37

Hi OP, i'm not in Bristol either but have a DD with Down's syndrome. Happy to answer any questions if I can. Hope you are keeping well x

Original poster
JoBristol · 27/07/2018 18:49

Hi Gilbert
Thanks for your message.
So how has your first year been?
I have 3 other children so Just don’t know what to expect this time round. So when your baby was born, did you have any problems with feeding? I have read that some baby’s with Down’s syndrome can struggle because of their weaker muscle tone. I’ve already told the midwife’s that I will refuse to leave the hospital until feeding is established 😃
How about sleeping?
I’m having a scan on Thursday because they were concerned at a previous scan that my babie’s tummy was slightly protruding so they are checking to see if there may be a possible blockage in her bowel. Fingers crossed the scan will tell me otherwise.
Thanks again for getting in touch.
Look forward to hearing from you.
Jo 😃

OP posts:
Original poster
JoBristol · 27/07/2018 18:54

Hello
Thanks for your message.
So how is everything going with you and your little girl.
I’m also having a girl so really happy.
I suppose I have fear of the unknown, unsure if having a baby with Down’s syndrome will be much different to my other children.
Just hoping the sleeping and feeding goes ok and haven’t found many groups in Bristol yet so need to keep looking.
Jo x

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Gilbert82 · 27/07/2018 19:30

Hi! Our little one is just coming up to a year old! It’s honestly been the best year of my life Smile. He is our first baby so we don’t have anything to compare with. We did have some problems breastfeeding so ended up combination feeding as it was too tiring and stressful for him. I was desperate to breastfeed but had to put my wishes aside and do what was best for him (I keep trying for almost 4 months but it just didn’t work out for us). He was very sleepy as a newborn and still sleeps a lot now, we have been very very lucky with sleep!
I hope your scan goes well, keep us updated! xx

Original poster
JoBristol · 27/07/2018 20:44

Hi x
Lovely to from you. So glad you’ve had the best year and with lots of sleep. Good baby 😍
Well done for trying with breast feeding. I’ve already decided to have a go but not going to try too hard if it’s too stressful.
Will update you on Thursday after my scan.
Have a lovely weekend.
Jo X

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MargoChanning · 27/07/2018 20:50

Hi Jo!

Just wanted to pop on the thread to recommend this amazing blog by a mum with a gorgeous little girl called Natty: www.downssideup.com

BlytheofWindyWillows · 27/07/2018 20:58

Hi Jo,

She's 6 now and at school. We were lucky and had no problems feeding. She was breastfed until she was 13 months without any problems. She had heart surgery when she was 4 months but came through it brilliantly x

BlytheofWindyWillows · 27/07/2018 20:59

Happy Birthday to your LO when it comes Gilbert82 x

Gilbert82 · 27/07/2018 21:16

Thank you Smile I can’t believe how fast the year has gone!
Just to add we are extremely lucky in that our baby has no other medical conditions (nothing showed up on any of our scans so it was completely unexpected when we were told he was showing signs of T21).
Have a lovely weekend too x

Original poster
JoBristol · 27/07/2018 21:35

Oh wow
Thanks for your message.
Lovely to hear from you with your
positive stories.
Thanks
Jo x

OP posts:
Original poster
JoBristol · 27/07/2018 21:37

Hi Margo
Lovely to hear from you.
Thanks for the link.
Will check it out.
Jo X

OP posts:
selfishcrab · 27/07/2018 21:49

www.facebook.com/sglospandc/ , may be worth posting on there OP.

Original poster
JoBristol · 27/07/2018 22:11

Oh great, thanks for messaging.
Will have a look.
Jo 😃

OP posts:
Susie7073 · 01/10/2018 14:57

Hi Jo
I am the chair of Trustees for Ups and Downs Southwest. We offer support, advice and face to face support to any parent of a child with Down Syndrome. At the moment we are offering telephone contact on 01278691100 or you can contact the team on [email protected]
There is also a useful website on www.upsanddowns.net
I am in the process of sourcing funding to set the service up in Bristol and the website will keep you posted.
Do get in touch. Susie

Original poster
JoBristol · 01/10/2018 15:40

Hi Susie
Thanks for your message.
I’m having my baby girl in 2 weeks. I will be nearly 37 weeks by then.
She has a narrowing in her tummy so may need an operation after birth so will have to wait and see when they have checked her over.
Will keep in touch.
Jo

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