Advice re. breath holding and reflex anoxic seizures

[Jellywellyfish]

I’m now 24 hours post my 8 week old daughter having her first breath holding episode - and I’m absolutely terrified and seeking some reassurance.

We were discharged from hospital yesterday and it’s my first night alone with her and I cant do anything but watch her chest rise and fall, even though I know that’s really not necessary.

If you have time to read, my little girl had her 8 week immunisations on Thursday and had fed and slept lovely in the first 6 hours afterwards. My husband woke her from her nap so we could give her calpol and as he was changing her nappy she gave an almighty red faced cry, followed by a cry I’d not heard before - it was deep, deep cry like she was in severe discomfort.

I told my husband to bring her to me so I could calm and soothe her by breast feeding her and as he put her in my arms her whole body went limp and she turned grey. I knew she had stopped breathing and told my husband to call for an ambulance. After what felt like a lifetime of me calling her name, singing and bouncing her on my knee (I didn’t know what to do) she started to breathe and cry, and I just kept her crying until the ambulance crew turned up. She stopped breathing and drifted out of consciousness 3/4 times in a 20 minute period (that’s how long it took for an ambulance to arrive).

We went to A&E and they did an ecg on her and checked all her stats and all were stable. They kept us in overnight thankfully to monitor her and she was fine.

We got discharged this morning and before we did so, I spoke to the consultant who put it down to breath holding due to crying from the info I gave her, which to be honest at the time still being in shock, was that she went unconscious after crying. I didn’t think to mention that she cried as my husband knocked the injection site as he changed her nappy.

I have since been googling and I think that what she actually had was a Reflex anoxic seizure. The cry she did was in response to my husband moving her legs to change her nappy (she had also only just woken up so was sleepy and probably hadn’t adjusted to her surroundings) and I think shocked her and the pain triggered this seizure. I feel like I need to speak to a healthcare professional to see what they say, and almost frustrated I won’t be able to speak to the paediatric consultant again to get their opinion. Thinking I should ring my doctor on Monday to ask to speak to them to get their opinion? I would feel better getting it out there that I think the episode she had was a Reflex anoxic seizure and if they agree have it on her notes in case it does happen again.

Im so deeply traumatised by this I cant stop crying when I think about it. I’m absolutely terrified to fall asleep in case she stops breathing. How do you ever go back to ‘normal’? Any reassurance would be welcomed.

I’m booking my husband and I onto a first aid course for babies in case this ever happened again (at hospital they gave me no aftercare advice for what to do if it happened again, they just said it probably wont ever happen again) and I’ve also just purchased a baby breathing monitor which I hope will help me to be able to sleep (at the moment I’m making my husband and I take it in shifts to be awake while she sleeps).

Thanks for reading. One very stressed out mama x

My son had reflex anoxic seizures about three times when he was age 2 and he's never had any since. His were caused by a shock, for instance one time he thought he was going to run into a lamppost and he just collapsed. Each time he stopped breathing and that was absolutely terrifying. He then had a seizure which was equally terrifying and then came round from it. Each time I blew on his face trying to get some air into him. I'm not sure whether that made any difference but it made me feel like I was doing something. The doctor told me that the seizure would mean that he started to breathe normally again and that I shouldn't be frightened of it. Those were horrific experiences. The doctor told me that some people had them intermittently throughout their life but most stop at the age of two. Don't assume that this is what your child has. I really hope everything is okay. I know how shocking it is to go through that. 💐

My DD has breath holding episodes. My HV advised blowing as hard as possible in her face to snap her out of it, which did usually work,
She would take a huge intake of breath like she was about to do a big cry or scream and just fall completely limp and unconscious. It's bloody scary! She grew out of it thankfully.

my youngest child did this a lot when he was small and my oldest child did it once when he hurt himself.
it is terrifying I know and my youngest has scared medical professionals when he has done it in hospital a few times. ( he also has epilepsy and complex needs) . So anyone would be freaked out by seeing it and your reaction is totally understandable but you will get your confidence back.and begin to relax given a bit of time.
You do get used to it to some degree if it happens regularly but what helped me most was when they explained that once he actually passed out the body relaxes and the automatic reflex of breathing kicks in and they quickly recover.
That is no help at the time because blind panic sets in and all reason is lost but I have now seen this many times and know it to be true so if it does happen it is not so scary.
I second first aid training to help you feel more confident and we have always used a sats monitor to check oxygen levels though that is more because of seizures .
The good news is they tend to outgrow it but that will be little consolation at the moment .
I am sorry you have had such a terrifying experience and really hope your little darling doesn't do it again and it was a one off x

Hi OP, I've just come across your post and was wondering how your LO is getting on? We're going through the same thing with our 11 week old DS3 right now 😢

@Listeningtotherain

Hi OP, I've just come across your post and was wondering how your LO is getting on? We're going through the same thing with our 11 week old DS3 right now 😢

I’m sorry to hear you’re going through this - it’s truly awful. We haven’t had anymore episodes since the night it happened thankfully. I have relaxed a lot more and not holding her like I’m going to break her now - people did tell me it would get easier but I found it hard to believe at the time. One thing that really helped me as I was scared about her stopping breathing was buying a Snuza breathing monitor. It clips to her nappy and I sleep well knowing an alarm will sound if she doesn’t breathe for 15 seconds - she’s had it on every night since beginning of March and no false alarms. It’s also approved by the lullaby trust. She had more immunisations a few weeks ago and we just kept her dosed up on calpol and nurofen (she’s a bigger baby so we could do calpol every four hours) and we gave it to her before the appt too.

I found this website helpful www.heartrhythmalliance.org/stars/uk/and there are groups on Facebook I’ve joined which helped.

It’s the worst feeling as a parent you’ll ever experience so make sure your give yourself time to get over the trauma.

My husband and I are also doing a baby first aid course but on that link above it gives you advice on what to do if it happens again on the care plan templates so have a read of those.

Thinking of you xx