Premature babies development / delays

[MPDnicu25]

Hello. My DD was born at 27 weeks 5 days weighing 1lb 12.05oz and she has recently turnt up one. We had a long 3 month stay in NICU and still under consultant care, DD came home on oxygen, had a bleed on the brain, has chronic lung disease, a PDA & a suppressed immune system meaning she has a monthly RSV jab.

At her recent Neonatal consultant appointment we have been referred to a physio, my concern is that my daughter is one years old (corrected 9 months). She has only just gone into 3-6 Month clothing, she occasionally rolls over but that’s it. She will will only roll one way, she does not sit up unaided and of course doesn’t pull her self etc, If I hold her up in a standing position she will pull her legs up and cross them unless she is in her jumperoo she will tip toe.
I have done the worst thing and googled and everything is coming up as Cerebral palsy, of course I pray this is not the case. Has anyone had a similar experience and if so what has been your outcome.

Many thanks

Hi lovely

So my DD was premature (but 34 weeks) and she does have cerebral palsy although hers is very mild.

When I first heard the words cerebral palsy I was so scared. Of course all the online sites list the worst case scenarios and all the possible problems that can come with CP. But every child with CP is affected differently and there is a huge huge range from children who can’t lift up their head to those you’d barely know had CP.

I know you are seeing a physio and that’s crucial, but the physio can’t diagnose. You should also ask to see a paediatric neurologist for diagnosis.

Physio will give you exercises to do with your little one to strengthen and stretch and balance up how much she uses her two sides. Exercises and stretches can make a huge huge m difference especially at this young age. The more you can get her to roll, pull on things, use her tummy muscles the better. Also daily gentle stretches with any tight muscles. Encourage her with toys and snacks - whatever works. Even if she doesn’t have CP she will benefit from this.

Good luck with the physio, I wish you the very best. And if she does have CP she’s still your lovely little girl even if she takes longer to master some things.

My ds3 had a very similar start in life (25wk, home oxygen, pda, rsv, cld). One thing I noticed compared to my full term kids was that they were much more proactive in identifying possible problems early, even if they then turned out to be nothing.

I think it’s really hard for them to identify what is just delay and what has an underlying cause.

My ds was behind for most things at various points, mostly caught up now aged 3 (except potty training, and I even find myself wondering if that is related to prematurity rather than just being his style...)

What matters most in life is character not leg control. Whatever the outcome is, your dd is amazing.

Thank you both so much for replying - it’s hard to know where to turn as services are currently not running fully and I don’t know a huge amount of mums in a similar situation with having a preemie baby.
I am waiting for our first physio appointment but I am going to ring my consultant and push to see paediatric neurologist too, I think as a mum you have the mother’s instinct and I need to push for some further testing! Thank you both so much 💓💓

OP had twins at very similar gestation (27+6) although they didn't have some of the additional issues you've listed. I just wanted to say being so behind is not necessarily a sign of issues (although you're absolutely right to try to get some checks / referral). Twin 2 didn't even roll once until he was 9 months (still think it was an accident - he looked quite shocked afterwards) and he didn't do it again until well past his 1st birthday. They weren't sitting up or cruising at 1 and would scream if we ever tried putting them on their tummies.

They did take a few steps around 15 months but still took a while to be steady. They we're signed off as having caught up to their peers at 2yo, but they were nowhere near 1yo.