Prematurity · West Syndrome

Everyone needs a helping hand.

Everyone needs a helping hand. Everyone needs someone to talk to. Everyone needs a shoulder to cry on, and an ear to talk to.

The reality is, not everyone has this support at home. Some people are so isolated, and find it hard to cope with their birth, their child and their disability or any other number of things.

This is why I decided to write a blog post, listing some of my favourite support groups on Facebook. 

Prematurity

Parents of Preemies Support UK – This group is the biggest preemie parent support group exclusively for parents in the UK. They support parents of preemies up to 36 weeks gestation. Both mums and dads are welcome ❤

Preemie and Nicu Family Support and Guidance – If you’re not from the UK, or if you’re a family member but not the parent/legal guardian then I’d recommend this group. It is mostly based in the US, but they do accept any family members of a NICU baby.

Micro Preemie Support Network  – Again, this group is mostly US based and they only accept parents of preemies born on or before 28 weeks gestation… but it can be a great place for support for anyone who has any questions regarding Micro preemies specifically.

West Syndrome

UK Infantile Spasms Trust Support Group – This group is quite a small, close knit group but it is a great source for knowledge and support. The admins here are a fountain of knowledge, and have even set up the UKs first Infantile Spasms charity!

The Infantile Spasms Community – Again, this is a much bigger group and is mostly US based. But for anyone reading this who isn’t from the UK this is a brilliant group to join ❤

Parenting

Mother’s Meeting – Of all the non specific parenting groups available on Facebook, this one has to be my favourite. So many parenting groups are full of pictures of babies with “guess my age/gender” or “Do I look fat/thin/pregnant in this top”. Not to mention the countless guess my gender scan photos, and photos of pee sticks which clearly say pregnant with “Do you think Im pregnant!!??” Mother’s meeting thankfully isn’t like that. I’ve never seen any nastiness, and most of the people give brilliant advice.

Additional Needs Parenting

POPS UK – Additional Needs Support Group – If you join Parents of Preemie Support UK, then you should also join this group if your child has additional needs. It’s a great support network for parents of preemies, where their child also has additional needs.

DDR Additional Needs Group – Yes, I see you there with your look of shock and horror. DDR, support, group!? But all jokes aside, the additional needs group is fantastic.

DLA For Children Advice & Support – This is a brilliant group for anyone going through the DLA application process. It is a very friendly group and they often signpost people to places where they will find extra support and guidance.

Special Needs Parents Social Group UK – This group is like one big coffee morning, but with other parents who “get it”. Each one has a child with additional needs, and each one knows the struggles and triumphs of raising one. It’s quite a small group and conversation can be slow, but it is a great place to talk and meet people.

Special Needs Equipment and Advice page UK only – Please note, this is NOT a buying and selling group, but rather a group where people can ask for advice regarding equipment for their children. Again, this group is really good at giving out advice and signposting to other organisations that can help.

Tube Feeding

Tube Feeding your Child in the UK – This is a great little group for any child in the UK that is tube fed. Regardless of the type of tube, they are very helpful and supportive and can help with a variety of problems.

Tubie Doodles – I think we would all be surprised if I didn’t mention this little company. They are a fantastic organisation that make and sell brightly coloured, hypoallergenic tape for NG tubes and Nasal prongs. Whilst you do have to pay for the tape, the cost is minimal.

Long Term NG Tube Fed Bubs – This is quite a small group, and is for NG fed children only. The group is mostly US based but any reader who is not from the UK may find it useful 🙂

Pre-Eclampsia

Pre-Eclampsia Mums UK – This is a relatively new group, but the support here is fantastic. All the ladies here are either going through the stress of a pre-eclampsia diagnosis, or have previously had pre-eclampsia. They are also very knowledgeable about premature birth as many of the parents have gone onto have premature babies as a result of their pre-eclampsia.

I hope these groups help someone, if anyone has any groups they want to recommend please do feel free to share them below ❤

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