To ask for help with my blue baby

[Sleepingallday]

Not an AIBU sorry, posting here for traffic.

Does anyone have experience with a baby repeatedly turning blue?

my son was born on Saturday (meconium in waters, fast delivery, not sure how distressed he was) and within a couple of hours he turned blue and stopped breathing. Midwives put him on resus table and he came back.

this happened 3 more times in the next day or so of our hospital stay and on the last time they took it more seriously and gave him antibiotics and tested blood. All results came back clear though so no explanation.

we stayed in hospital for another 48 hours from the last episode and then were given all clear to go home. The thinking was it was probably feed/reflux related as it seemed to happen while winding or just after feeding, and labour was so fast he didn’t get a good squeeze on the way out and it’s a bit of fluid hanging around. So hopefully wouldn’t happen again as he starts feeding well etc.

so we took him home on Tuesday but this morning he had another episode, went floppy and blue and not breathing. I put him on his side and thumped his back and he came round but it was terrifying.

we’ve brought him to a&e as consultant had said if there was a fifth episode he would have been admitted. A&e will monitor his oxygen overnight and test blood but seems like this is the extent of the testing and I feel we won’t have any more answers after this.

I am desperate for some sort of explanation as I can’t get my head round the idea that my son will just periodically turn blue and stop breathing and there’s nothing we can do except whack him on the back and hope for the best when it happens.

has anyone else experienced anything like this? Thanks so much

I would be asking for him to be admitted now.

Hopefully they’ll admit him but you really need to learn some paediatric basic life support quick time.

There are lots of videos on YouTube, search paediatric BLS.

Wishing you well, it’s scary.

Will he be seen by a neonatologist, @Sleepingallday? Where will he be monitored overnight, in the emergency dept or in the neonatal unit?

This 100%

You poor mum x

If it's around feeding can he have a (think it's called a swallow study?) to test if milk is going down right way?

Likewise. Would I heck be taking him home to wait for the next time! He should be in hospital having tests and being monitored. I'm so sorry you're not getting such basic care you must be bloody terrified!

this sounds terrifying. I am so sorry you are going through this.
can you ask if they have checked his heart?
best wishes

I'd refuse to take him home without some answers.cohld he reflux related, a swallow study would show this?

Floppy larynx? Can't remember how they diagnose this but changing sleep position helps.

Have they monitored his heart?

Do you have a breathing monitor like the angel are ones for his cot?

I'm sure my brother did similar as a newborn and absolutely terrified my mum & dad! I'm pretty sure it was acid reflux but I will ask mum if you'd like? I know it wasn't anything serious although they were incredibly worried for a time

(Serious as in needing hospital interventions etc, obviously the episodes were serious and worrying but it was an 'easy fix' if you like)

Thank you all for the replies, much appreciated. His heart was monitored and deemed to be fine, everything else with him seems normal which is why it’s so confusing.

Think we will be staying in a&e overnight, apparently there are no beds anywhere, someone came a couple of hours ago and said they were moving us to a cot room but not heard anything since.

I will look into the swallow study, thank you.

we will be definitely buying a sleep monitoring machine.

it is terrifying and I feel heartbroken looking down at my wee boy sleeping not knowing what I can do for him

I'm so sorry you are going through this. I would definitely ensure that you are seen by a cardiologist and get an ECG and echo to really check the heart (if this hasn't already been done) and ask for a SALT review so that they can check he has a safe swallow. I hope you get some answers soon.

Not knowing what you can do for him? You've taken him to hospital, the absolute best thing you could do. Your wee baby has a wonderful mum, and he's only been in the world a few days.

This! A thousand times!

You were on your own during one of these episodes and did so well despite being terrified, and then sought help. You did amazingly.

Take him to hopsital and refuse to leave. What if that happened in the night when you are asleep?! Definitely insist being seen by cardiology. I had a son I lost to hypoplastic left heart syndrome so I know a lot about heart defects. Often they are undetected in pregnancy and this is ringing huge alarm bells for that. I hope you get some answers. I would not be leaving the hospital and would insist he was hooked up to some sort of monitor that blasts an alarm if he stops breathing.

This sounds like BRUE - an umbrella term which means brief resolved unexplained event and has many causes. With your baby’s age and the fact that it has happened more than once means that they need to be seen by a senior paediatrician and assessed further. You are in the right place!

I have no advice, I'm sorry. But I wanted to send my love and best wishes to you and your baby son.

What a terrifying experience for a new mum. When you are just recovering from a birth too.

Don’t leave unless you have answers.

And look after your mental health. It can taken a battering after experiences like this and you might not even realise the impact it’s had on you x

My sister used to do this back in the day - it happened a few times, very very scary then she grew out of it at maybe 6 months old.

There is something called central sleep apnoea where the brain doesn’t give the signal to breathe, from this page it seems this is something some babies have but will grow out of unless there is an underlying cause.

It sounds like babies can be taken in for sleep studies but I don’t know what the threshold is for this eg how many times this has to happen.

I’m sorry, it must be terrifying for you.

It is a long time since I worked in paediatrics but I would advise you to invest in a breathing alarm pad set for under mattress in crib and cot. it emits a high pitched alarm to waken you when no motion is detected. breathing means making movement. you can also buy a set with video cams too.

Agree with this. Well done for being such a fab advocate for your baby.

My baby used to go blue, they had a critical heart condition! I would be asking for an echo ASAP! Xx

How on EARTH are they saying no beds for a 5 day old baby? Surely as he's so young he should be in SCBU? Standard protocol in Northern Ireland for a baby that needs SCBU or NICU is to transfer them immediately to nearest hospital with a space even if you go to Belfast and they move the baby to Derry (or in one unfortunate case, a pair of twins ended up at opposite ends of the place)! Is this not the case in England?

Yes I had this with my son but when crying. It can be quite common when crying to breath hold and turn blue/pass out. My son does have other medical conditions so was monitored anyway but things I would want checked knowing what I know now and what was checked when newborn…..

ECG for the heart - quick ultrasound
Anything airway such as a swallow study - very easy for them to do
Sleep study - again very easy on the ward we still do them at home 7 years on.

Even if feeding related they need to asses what the cause is and what to do about it. Refuse to go home until resolved.

I’ve had to do cpr on my son twice now so I feel the pain. I understand how scared you must feel. Don’t let anyone fob you off. Unless crying I’ve never heard of this being ‘normal’ and my LO has all sorts of conditions.

Failing all the above….. bloods for oxygen AND co2.
Thyroid function.

Hope everything is ok. Hold on there.

Don’t leave until you have answers and are given advice how to cope at home if needed.

You have done fantastically well to deal with this, I can’t imagine what it must be like.

congratulations on your new baby boy, I hope you get this sorted soon and are able to enjoy your new baby

Please get an owlet my youngest had similar and grew out of it ( she was preemie)