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Child Development delay after 3month hospital stay

6 replies

OneWittyHedgehog · 27/07/2025 12:02

My little boy suffered a birth injury. The nerves in his neck were stretched causing him to have erbs palsy and also phrenic palsy (paralysed diaphragm)
we spent 13 weeks in hospital where we were confined to his cot due to him being on high flow, nj fed so 22 hours a day hooked up to a feeding pump and sats monitors.
now we are home I am worrying myself that he has fallen behind with his development as he isn’t yet able to hold his head very well.
i think there’s a chance I am just overthinking all of this. Being a first time mum and all the added stress of the birth injury complications is sending me crazy.

has anyone else’s little one spent a prolonged time in the hospital and they’ve felt the same?
thanks

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allthesmallthingsarehere · 27/07/2025 12:18

Oh, bless you. You poor thing.

So we didnt have as long a stay, but my daughter did have multiple admissions (20+) before she was 2, plus a NICU stay to start her off.

Her development was a bit all over the place for a while. Some things were fine, some things were not. I stressed ENDLESSLY. My HV was exceptionally brilliant at doing monthly Ages and Stages reviews, and generally just keeping me calm.

By far and away, her biggest challenges were her emotional regulation. She found it impossible to be separated from me, she could not calm down when she had injured herself, any illnesses sent her into a complete panic.

She is now very nearly 5 and I can honestly say that, except for her neurotic mother, you would never ever know. She still has some areas that she is stronger in than others, but that now looks 'normal' comparison to all those other children in her class who had an easier start, but also have their own strengths and weaknesses.

My biggest recommendation is to connect up closely with your HV. Ask them to support you with regular development reviews. You can also download the Ages and Stages online so you can do these yourself at home too. Any concerns, don't be afraid to ask for referrals to e.g. physio, S&L. Some of these things are available privately and not necessarily hugely expensive so if the NHS is slow and not reassuring you, then you could consider that. And finally - consider some counselling for yourself. I suffered horrendously with health anxiety after things had finally calmed down and needed a lot of support. If you're under a year postpartum then a referral to your local perinatal team might well be helpful for you, even if they just refer you on x

OneWittyHedgehog · 27/07/2025 12:25

allthesmallthingsarehere · 27/07/2025 12:18

Oh, bless you. You poor thing.

So we didnt have as long a stay, but my daughter did have multiple admissions (20+) before she was 2, plus a NICU stay to start her off.

Her development was a bit all over the place for a while. Some things were fine, some things were not. I stressed ENDLESSLY. My HV was exceptionally brilliant at doing monthly Ages and Stages reviews, and generally just keeping me calm.

By far and away, her biggest challenges were her emotional regulation. She found it impossible to be separated from me, she could not calm down when she had injured herself, any illnesses sent her into a complete panic.

She is now very nearly 5 and I can honestly say that, except for her neurotic mother, you would never ever know. She still has some areas that she is stronger in than others, but that now looks 'normal' comparison to all those other children in her class who had an easier start, but also have their own strengths and weaknesses.

My biggest recommendation is to connect up closely with your HV. Ask them to support you with regular development reviews. You can also download the Ages and Stages online so you can do these yourself at home too. Any concerns, don't be afraid to ask for referrals to e.g. physio, S&L. Some of these things are available privately and not necessarily hugely expensive so if the NHS is slow and not reassuring you, then you could consider that. And finally - consider some counselling for yourself. I suffered horrendously with health anxiety after things had finally calmed down and needed a lot of support. If you're under a year postpartum then a referral to your local perinatal team might well be helpful for you, even if they just refer you on x

Thank you for this! He is only 13 weeks, so he has spent all his life in hospital. 6 weeks in NICU and 7 on a paediatric ward.
We have referrals in place from physio and SLT and I’ve been in touch with my HV and she has been great.
We were only discharged on Thursday, so I think I am just stressing myself out and obviously with it being the weekend, we haven’t heard from anyone yet so I’m hoping tomorrow I’ll hear off some people and it can put my mind at ease xxx

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allthesmallthingsarehere · 27/07/2025 12:35

Sounds like theyve/you've been really proactive and got all the balls rolling with support in place. Well done.

Early days. Allow yourself some really deep calming breaths. You are home. Youre all safe. He will be okay. X

GoodStuffAnnie · 27/07/2025 12:48

Bless you!

just try to be very low key for a few days / weeks. Just sit and watch what ever tv you like. Eat whatever food you like. Sit on the sofa. If you find visitors ok have them. If not say no. You will feel better in a few days.
get some baby books and read to your son. Dangle baby toys in front of his face and tickle him. You’ve had a rough start but you and him deserve normalcy. Drink lots of tea and eat lots of biscuits.

I am mum of three and teach in early years. I don’t know your son but my best educated guess is with a loving mum like you your son will be fine.

allthesmallthingsarehere · 30/07/2025 19:36

How are things now you've had a bit more time to settle in at home, @OneWittyHedgehog ?

OneWittyHedgehog · 30/07/2025 22:46

allthesmallthingsarehere · 30/07/2025 19:36

How are things now you've had a bit more time to settle in at home, @OneWittyHedgehog ?

Thank you for checking in 🥹 honestly, I’m struggling. I think I’ve had a realisation of what we have actually been through and after having 3 months of hospital and help/reassurance being just a call away I’m struggling with the transition on being home. We have physio on Monday and SLT are arranging a visit so that will no doubt put my mind at ease a bit more.
Think I need to give myself time xx

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