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It you’ve had a baby who’s been badly ill...

(37 Posts)
Pleaseneverstopbreathing Sat 17-Feb-18 21:24:18

Do you ever get over the fear? Waking them up while they sleep just because you want to be 100% sure they’re breathing?
Wondering every time they make an unusual noise if they are struggling to breathe? Unable to sit in a long car journey with them asleep because you can’t see them and panicking that when you get to the destination they won’t be breathing?
My young baby has been seriously ill, we’re home now (daily hospital visits though) and this is how I feel. He’s got the all clear for now but long term could face a number of problems. Am I going crazy? We only got discharged this week, is this normal? Will it pass? I just want to enjoy my baby now we’re home.

I’m sorry if this is triggering for anyone, I didn’t know how to word the title and don’t want to upset anyone. I don’t know anyone who’s had an ill child and feel so alone

Wolfiefan Sat 17-Feb-18 21:29:21

I'm so sorry. My eldest was very ill as a toddler. It was a recurring thing and we weren't at all sure of the prognosis. For a long time I think "the edge of panic" was where my head was at.
It's very fresh now. Your child is very small. For me each day and week and month that passed he got stronger and we had more information and he grew and we felt better prepared.
How about looking at ways of coping with the anxiety for now? Definitely chat to someone about it though. Health visitor? GP?
Good luck.

1sttimeunicorn Sat 17-Feb-18 21:29:51

Sorry you feel so alone. I haven’t had a poorly baby and I’m so sorry to hear about what you’ve gone through lately. I do, however, suffer with anxieties about my DS - when he was tiny I had that car seat fear, and the breathing thing. Now he is nearly ten months old and sleeping in his own room I creep in multiple times a night to check him. It has got a lot better for me and I think it will for you but maybe just needs time and for your DC to get bigger and stronger so that you feel more confident. I’d discuss any worries about anxiety with the GP tho.

Iceskatingsnake Sat 17-Feb-18 21:42:00

I’m so glad your little one is home again. There’s nothing that compares to seeing your baby so sick. It’s torture.

I’d say that listening for every breath etc is to be expected at this stage but if it carries on after a month or so I would talk to your GP. It could be that there an element t of PTSD involved if the feelings don’t diminish.

DD was take to NICU after an EMCS. I saw her for a while after she was delivered and as I was really ill went back to sleep . When I woke she had been taken to NICU because a nurse walking past the nursery found her blue and twitching. No one seemed to know how long she had been like that. She was touch and go for 9 days but she improved and by 10 we were moved into a general ward. My panic and anxiety around her health never really disappeared and I wish I’d got help. DD is 32 now and I don’t think traumatic births were acknowledged as something that could cause lasting anxiety/depression for the mother. I was a wreck though and really would have benefitted from some support. Because no one seemed to know if there would be effects later in life I was on constant red alert. If DD was a moment late in reaching a milestone i went into panic mode that she was brain damaged. If you don’t start feeling less anxious in a few weeks I’d definitely see your GP because it’s such a desperate feeling and there is help out there.

AshGirl Sat 17-Feb-18 21:48:51

Our DS was very ill after he was born and we didn't get to bring him home for 2 months.

That first week out of hospital was fucking awful, I won't lie. We were in a constant state of near-panic plus trying to work out what to do with our PFB newborn.

It has got easier over time. He is doing really well health-wise now but if he is sleeping very quietly then I still check he is breathing blush

Be kind to yourself. This is a terrible thing that you have been through. Time, counselling and DS getting better and more robust have healed some of our wounds but we will never be the same.

Good luck thanks

tenpencemixup Sat 17-Feb-18 21:52:26

My son was born with critical heart and lung defects he had multiple operations and ongoing medical interventions that meant he spent a the first year of his life in hospital. He didn't come to live with at home until after his first birthday.and then he had complex care needs I had a form of ptsd as a result and it really affected me. It's only time and counselling that have helped but I still have triggers and anniversaries of certain events are difficult. Be kind to your self. How is the baby's father? Share your worries with someone in real life. Your hv might be able to keep an extra eye on you both. They are there for you, not just the baby.

flapjackfairy Sat 17-Feb-18 21:57:07

I have a long term foster child with complex needs who has been critically ill twice over the years.
Both times i was convinced that I would never ever relax again but with a bit of time normality resumed and things settled down. Give yourself time. It is early days. V sorry you have had such a rough time x

frogsoup Sat 17-Feb-18 21:59:21

Yes, it fades. I still look at my 7yo DS (who was born 3.5 months early) in wonder and awe that he is here and healthy. And I still find it hard to hear medical monitors, especially sats alarms, and burst into tears at the sight of neonatal ambulances. But there is not that heart-wrenching constant anxiety of his early years. It all seems like a bad dream some days and I can't quite believe we got through it. You're vv early days yet, give it time and yourself kindness flowers. I found a sleep alarm helped, I know there is limited evidence for them but it used to reassure me (except when I forgot to turn it off after picking him up!!!!]

IncyWincyGrownUp Sat 17-Feb-18 22:03:54

I still check up on my six year old to make sure he’s breathing at night sometimes. He’s a snuffly/loud sleeper so when he’s quiet I go into mild panic mode.

It’s natural, though if you can’t rationalise it after a few months I’d speak to somebody.

Congratulations on being home though, it must be a wonderful feeling flowers

user1471530109 Sat 17-Feb-18 22:07:00

I agree it fades. She is now almost 5.

I do remember waking in shock and panicking everytime the bloody angel monitor alarm went off.
She was 11 weeks early and then in and out of hospital for 12 months. Poor thing had such a hard time.

But yes. The panic fades. Almost.
I hope your darling baby is ok and that you learn to relax (I hope that's not patronising. I don't mean it to be). My greatest regret now is not leaning to enjoy that year. I missed out on the little bits of joy 💐

corrianderisthedevil Sat 17-Feb-18 22:12:50

OP I am sorry you're going through this. I too had a very ill baby when he was tiny. For a long time I had what I can only describe as an 'impending sense of doom' feeling where I couldn't shake the feeling that something terrible was going to happen to one of my children. It's been 6 months now and that feeling is starting to move to the back of my head. It's still there, but much quieter. Before Christmas I told myself I would book myself some counselling to talk through what happened and see if I could find some coping strategies for my feelings. Perhaps that could be an option for you?

TheFreshPrincess0fBelair Sat 17-Feb-18 22:15:20

Yes this happened to us. My son was very poorly when he was a baby, he’s 4 now and luckily the problems he has from his illness are much better than we thought they would be.
When he was better my mental health was the worst it’s ever been. I suffered panic attacks and anxiety so badly. I am getting much better now. It’s like when he was ill I had to cope with it (and with my day to day life and taking care of my other children) but when he was home all the emotions came out.
I still worry about him and my other children too, very much so. I also feel like I feel so lucky he was ok that I feel like I can’t have anything else good happen to us because I have used up all my luck blush
I have a big family and he’s the youngest so he’s very spoilt anyway but I definitely baby him.
Sorry if my post is negative - I think what I am trying to say is get help sooner rather than later and let your feelings out to someone you trust flowers

MorningsEleven Sat 17-Feb-18 22:19:59

flowers We had a very ill baby and it was beyond terrifying for quite a while.

He's 8 now and a total joy with huge optimism and a very stubborn core. It gets better, promise.

Chocness Sat 17-Feb-18 22:23:02

You’re not going crazy, I’m so sorry you feel like this. I think it’s entirely to be expected so please don’t beat yourself up about these feelings.
My DS was very ill at birth too. It was a very traumatic time being told your baby could die or at least have lifelong disabilities. He’s almost 3 now and I still get upset thinking about it. He’s absolutely fine now but for me it did trigger a lot of anxiety which culminated in a need for me to control everything relating to him. I would panic if I wasn’t physically close to him or if he got upset. I couldn’t bear for anyone to hold him in case something happened to him. I still have to work extremely hard to not let these anxieties take centre stage. I am still super protective of him but I make no excuses for that. I don’t want to create an anxious toddler so it’s been hard to relax about him but I’m definitely getting there and you will too. Some practical ideas that might help you:

1) put one of those car mirrors on the back seat headrest so you can see your baby when you are in the car. Halfords sell them, you just strap them onto the headrest then angle the mirror so you can see your baby from your rear view mirror.

2) we bought an angel care bed monitor like one of these:
For when our son moved into his own room (c 6 months). We also had a video monitor so we could see and hear him at all times. We slept in the same room for the first 6 months. If we were watching tv in the evenings he was with us. When he was 6 months we relaxed a bit and put him to bed without us. He was fine albeit closely monitored!

3) I was very lucky in that my GP surgery was very understanding of what we had been through. I was given a direct dial to reception so if I was worried I could ring up the gp and get an appointment ASAP. That offered me a lot of comfort. Your doc will be included in correspondence about your son from the hospital so could you enquiry about something similar? We also live 10 mins down the road from a hospital, 25 mins from A&E. I know the quickest routes to both which gave some comfort too.

4) we were under a paediatric consultant who we saw every 4 months. I found that very useful.

5) I used nhs 111 When the gp surgery was closed. They can be v helpful.

So basically I set up a number of support systems to help should I need to. Thankfully I didn’t need them very much but it did give some peace of mind whilst I came to terms with what had happened to my DS.

Don’t feel alone in this, talk to your friends, family, HV, GP about how you feel. Things will start to calm down and you won’t feel so anxious about him. I know it’s hard, you’ve been to hell and back but things will ease. In the meantime don’t be afraid of these feelings or of talking about them. Feel free to PM me too if that would be of any help 💐

harverina Sat 17-Feb-18 22:26:23

Sorry you’ve had to go through this. It’s so difficult to see your baby suffer. But it’s also hugely traumatic for you, and the way you feel is completely understandable and natural.

My little girl suffered a brain haemorrhage when she was 4. For a long time afterwards I found it very difficult to sleep - I wanted to come check we constantly. I also thought a lot about the “what ifs”.

But it honestly does get better over time. You start to relax and life returns to some sort of normal - never quite the same but a new normal. I did access CBT via my GP two years after it happened and that helped too.

Pleaseneverstopbreathing Sat 17-Feb-18 22:28:27

Thank you everyone, I’m glad to hear it gets better and that all of you who have had poorly babies have pulled through it ok!
You’re right, It is early days and if it doesn’t pass I will speak to the HV or GP.

I’ve always been such a relaxed parent and just went with the flow with my eldest and loved the first year with her.

He was so healthy at first and went from being normal and happy at home, to ‘oh he’s a little bit hot let’s call 111’ to hooked up on monitors and told to prepare for the worst in a matter of hours, now I feel like we’re never ‘safe’.

DP is great but he’s not got the anxiety like me.

YouBoggleMyMind Sat 17-Feb-18 22:31:53

I could have written your post OP. Our 9 week old PFB has just come home after 7 weeks in hospital. Sepsis, meningitis, endocarditis, mitral valve regurgitation leading to 2 open heart surgeries and a stroke. He had a melt down this evening (reflux and wind) and we both freaked out. The fear will never leave us.

EekThreek Sat 17-Feb-18 22:34:07

For me, almost the opposite happened blush

DS had his first bout of bronchiolitis at 12 weeks old. He was hospitalised for 4 nights, spent 3 days of that in an oxygen box, and for 24 hours was fed via tube as feeding was too strenuous for him.

As I'd seen how bad he'd got that first time, it sort of reset where my panic button was, and I missed a chest infection, and could have sought help sooner on two further bouts of bronchiolitis (he was admitted to hospital again at 11mo for two nights).

Nothing ever seemed quite as bad as the devastating worry I felt that first time, and I feel terrible that it meant I didn't pick up other illnesses quickly later.

So from experience I'd say it could go either way. It's horrible to see your little one so poorly and be so powerless to do anything. Sympathies OP

BlackeyedSusan Sat 17-Feb-18 23:00:29

child dd has been ill and is recovering a little, but I still can't relax now she is recovering a bit.

AshGirl Sat 17-Feb-18 23:37:11

now I feel like we’re never ‘safe’

This is what is hard to explain to people who have never been through this sort of trauma. Everybody worries about their babies but if you have been at the sharp end with a very sick baby then you know that things can change for the worse very quickly sad

Hang in there OP. I found it very helpful to have counselling just to work through the experiences with someone neutral.

GreyBird84 Sun 18-Feb-18 00:28:21

My 9 month old almost died but by some miracle stabilised enough to be airlifted to another hospital for treatment & so far so good.

It hasn’t left me yet. We are getting counselling, I’m on anti depressants & diazepam. He is checked over every 4-6 months by various clinics.nothing sinister as yet. I’m taking a career break I don’t have the mental capacity for work.

We seen his consultant this week. He is fabulous & never gave up & we are so grateful to him. But his voice, everything just freaks me out - counsellor thinks I’ve ptsd.

Like you, my DH doesn have the anxiety. I literally just stare at him to make sure his chest is moving normally rather than rapidly when sleeping.

I also bumped into the midwife I had during the dark hours when they thought he would die - I told her I don’t think I’ll ever be right again.


Support wise I feel very much in limbo. He wasn’t premature. Totally unexpected. He almost died - we had our minister there etc but then he didn’t. There are charities for premature & those who have experienced death but none for my kind of situation that I can find. I know we are lucky to have him but I can’t escape this feeling of constant worry & waiting for everything to fall apart again.

mamaryllis Sun 18-Feb-18 00:45:35

Dc3 was born full term at 9lbs but fhr was 28bpm and she took 8 minutes to first gasp. She was in scbu for a long term with szs due to the oxygen deprivation and has brain damage. You do get less fraught, I promise. I did have some counselling after a few years as I was definitely suffering from ptsd, and that helped with the flashbacks a lot.
She’s 14 now. If I hear what sounds like her choking from another room I check, but I promise I haven’t checked she is breathing at night for a very long time. It does get easier.

mamaryllis Sun 18-Feb-18 00:46:23

Greybird have you looked at the birth trauma association?

Cloudylemons Sun 18-Feb-18 00:51:56

This happened to me with my youngest and it took years to believe that he was breathing. I wouldn’t travel too far from the (one) hospital that I felt I could trust. That child is 18 now 😊 and although I still worry and do check, it’s not every day. I hope you’ll gradually start to feel braver. Suddenly this tiny baby seems such a huge responsibility on your shoulders. The fear does lessen though x

TinklyLittleLaugh Sun 18-Feb-18 01:03:48

DD1 had bronchiolitis at 5 weeks old. The GP insisted she was absolutely fine and if we're went to A&E we'd be wasting everyone's time. DH would have listened to the GP but I insisted. Anyway we went to A&E, they took one look at her and she was in an oxygen box for the next three days.

It gave me a massive distrust of doctors and the feeling that it was totally down to me to keep my kids safe. Didn't help that DD1and DS1 were struck with chest infections regularly every winter and both of them had a couple of stints in hospital.

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