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

Sorry to hear about your baby struggling. What you describe is very similar to what my son experienced as a young baby, it took a while to identify the issue as when he was ok (and monitored) he was perfect, he was just seldomly struggling to breathe and a change of position like me running with him to the nurses’ station was enough to stop the problem and for them to asume I was just an anxious first time mother.

It turned out to be Laryngomalacia (or floppy larynx) this often corrects itself, sometimes a minor operation is needed. If they have not checked for it ask them to do it, he will need to be seen by an ENT doctor but your GP can order the initial tests before referring him.

Babies with Laryngomalacia often have a noisy breathing (think Darth Vader in a smaller scale) or stop breathing when the larynx falls on the wrong position. I never had an alarm to wake me up but then I was so worried I was not sleeping very deeply anyway so I was able to turn him around very quickly. He always traveled in the front seat in the car (air bag disconnected) so I could stop and turn him around quickly if he stopped breathing.

The whole issue was resolved before he was 6 months so hopefully if this is the problem, you all will get out of this worry very soon.💐

Could it be anything to do with laryngomalacia? Floppy flap, blocking his airway?

My dd did this. She had laryngomalacia. She struggled with feeding too. Tried to gulp it but her throat couldn’t keep up with the flow. After feeds, she’d go blue.

deffo push to check.

you’re an amazing mummy. Make sure you’re looking after you too x

I don’t know what tests were run but I would be asking for an echocardiogram to rule out a hole in his heart or a valve defect. I would also be requesting/ordering a breathing sensor alarm for his bed asap. (Also known as SIDS alarms.)

Another test I would request is an apnoea study. Some babies have “floppy” airways and need extra support to keep them open (like a paediatric bipap or cpap machine.)

OP, my grandson did this within days of being born. There was no explanation given - 'just one of those things'. It kept happening and remained unexplained.

It's still happening regularly. Neighbours, nursery, strangers in the street have all witnessed these episodes and have been shocked by how upsetting they are.

They became worse as he got older and other symptoms began to manifest. He eventually had a series of eeg tests which came back normal, mri normal, bloods normal. Then he had a 48hr eeg and it showed a lot of activity at times during the day and night - even without him showing any of his usual symptoms of episodes.

He was finally diagnosed with epilepsy this week. He's three next week. It took from birth to now for a diagnosis and I feel it's only the beginning.

I was very impressed by the way my daughter became so adept at handling her 'blue baby'.

Again, another vote for the owlet.

Hi @Fraaahnces

That sounds really terrifying.

I‘be been there too. My daughter stopped breathing on 2 occasions when she was 3 months old. We only became aware of it because we had a Sensor Breathing Monitor under the mattress of her cod bed which alerted us.

After the 1st occasion she was monitored in hospital for 24 hours and her oxygen, blood and temperature were normal. Nothing was found.

After the 2nd occasion the hospital conducted more checks on her and she was subsequently diagnosed with Laryngomalacia by an ENT specialist.

My daughter also had other symptoms which are common for this condition: I had problems breastfeeding as she couldn’t handle the milk flow and spat milk out. Subsequently my body produced less milk and I couldn’t breastfeed anymore. She had reflux and her breathing was very noisy.

If you google “ Sleep Apnea “ you find more conditions that can cause breathing difficulties.

Would definitely recommend a breathing monitor and an infant first aid course that covers CPR if you haven’t done so.

I also packed a Hospital bag which I could just grab in an emergency that contained essentials for baby and me for 24 hours.

All the best for you and your dc.

I concur with others it's extremely unlikely a term baby that has been home will be admitted to NICU or seen by a neonatologist. They come under general paeds. General paeds also have a lot of experience in looking after young babies.

I have seen lots of babies with this issue. There may be significant underlying medical reasons. Much/most of the time these are excluded and there is no absolutely clear explanation for the blue episodes. Because your baby is still so very young I would be hopeful this is an issue of transition (adjustment after being born), baby being mucousy, bringing up a little milk etc. These issues often settle within days and then hopefully it just stops happening. Or, if blue episodes are consistently brief and self resolve with no harm then this pattern itself becomes reassuring.

It may not be necessary to perform totally exhaustive investigations at this stage and I would not begin with the assumption that something is terribly wrong particularly as the early investigations have been reassuring.

However, your baby is so young and therefore so vulnerable I would absolutely want you to feel reassured and looked after in these circumstances. A significant period of inpatient observation with saturation monitoring for example, is what I would be trying to offer you. It will of course, never feel "brief" when your own baby looks blue(!) which is why trying to witness the episodes with an HCP present can also be really helpful and sometimes it is just a case of waiting for the opportunity whilst an inpatient.

(Obviously, a period of observation with saturation monitoring can also provide the opportunity to flag up any indicators of a more serious issue. I also think your baby should definitely be fully examined carefully by a senior paediatrician eg reg/consultant).

I don't think it is at all unreasonable to firmly state that you are unhappy going home whilst these episodes continue and you do not feel fully reassured that your baby is safe.

I wish you the best of luck and hope these episodes turn out to be a minor issue that resolves quickly.

Im sorry that you are experiencing this, it must be terrifying and you are being a fantastic Mum, really brave. My baby has OA-TOF which means her oesophagus wasnt joined to the stomach at birth and there was a fistula from the oesophagus to the trachea. When she fed, milk couldnt go to the stomach but went into the airway instead, causing her to choke and potentially turn blue. She had to have surgery to correct thisp. Some babies with TOF are born with the fistula to the trachea but the oesophagus still connects to the stomach. A contrast study (swallowing dye) at hospital could potentially help to look for this. It is a very rare condition with no cause (so unlikely to try and reassure a little), it just happens to a tiny amount of babies during development and it happened to us. Often not diagnosed until after birth. She now copes very well with her breathing thankfully but has struggled to manage solids, now doing well. In your position I would keep taking baby back to hospital if need be, there will be a cause and they need to help you find it f possible, your baby might need extra help. Owlets are meant to be brilliant although i didnt use one personally, but i did keep baby in my room until over a year and be careful when driving, etc. Just a huge hug and to say you are being really brave and a fantastic Mun, it is not easy at all when these things happen. You are very strong XXXXX

@Hexandthecity Ah sorry thanks for the correction. But do the neonatology doctors oversee their care for them from there or advise general paeds or is this general paeds stuff even though young ?

edit: I see @KidsDr has answered this. My mistake

I can't imagine how terrifying this must be for you op. Keep questioning them. Stay at hospital. Sending you strength 💛

Hope you get some answers soon op.
My granddaughter did this, at two days old, the day after she came home. My son in law got her breathing again and they took her straight to A&E, it happened again as soon as they got there, she was admitted straight to PiCU, she had all kinds of tests, ecg, eeg, bloods, scans etc. at one point she was given doses of liquid caffeine, prescribed to help with her breathing. They did a swallow test to see where the milk was going, no problem there,
They eventually diagnosed her with silent reflux and later with CMPA.
She’s eight now and our brave little warrior.
The hospital provided a breathing monitor which went under the cot mattress. It was a scary time and the monitor was a God send. Sending you best wishes.

How are you doing OP ?

I hope that your fears are taken seriously at the hospital and your little one is okay @Sleepingallday This thread with all it’s possibilities must be pretty scary to read.

I’ve never known babies be admitted to NICU either once they’re home, due to the risk of bringing in infections. NICUs are clean. In my Trust if they’re ex-nicu and still under the neonatal team they’ll be contacted to say they’re in, but they’re always cared for by general Paeds.

Hope your little one is ok OP. I would also recommend anyone learning Paeds basic life support.

@Sleepingallday I hope you get answers. If it’s of any use, I have an Owlet that we have never used and would happily post it to you. I bought it when pregnant and realised it was probably going to make certain anxieties of mine worse. I’d be happy to see it going to good use x

I hope you had a good night with no episodes. My dd went to Nicu just after she was born because she kept going blue and struggled with breathing.
We were let home on a Friday and readmitted on the Monday when she did it again. She wasn't put back to NICU though. It was a paediatric ward.
It was eventually found that she had a floppy larynx and also a milk allergy. I had to keep pushing though. It was very stressful because I didn't want to sleep in case something happened when I wasn't watching. Hope you get answers soon. X

Morning, thank you all so much for taking the time to write, it’s been so helpful reading about others experiences and now I have a good understanding of the sorts of tests I can ask them to do.

it was an uneventful night, he’s been hooked up to the oxygen sats monitor and all was fine. The doctors will be coming around this morning and we’ll insist on more tests being done. Had a lovely nurse visit us last night who was also supportive in telling us to voice our concerns when they come today. She told us there are other babies on the ward currently with the same issue which is also reassuring in a weird way. Sincerely hope it’s just a temporary complication and not anything more serious but we need to rule out these other possibilities before going home.

we’ve a 2 year old that neither of us have seen much in the last week which is also very tough. Hopefully the doctors will take our concerns seriously and get tests started quickly. Thank you all again

So pleased his sats are good. Hopefully that means that it’s less likely to be a cardiac problem. I remember the days of being terrified for my newborn and fighting to be heard. She is a twin, so her brother barely got a look in and neither did their big sister who was just two. All hale and hearty now at 17, 17 & 19. Wishing you and your family all the very best!

We had a poorly baby and a toddler, OP. She’s an adult now and remembers the time with fondness as she was totally spoiled by grandparents who looked after her.

she will be fine, toddlers have no sense of time. It’s hard on you because you can’t be in two places at once.

Ask to double check for TGA?

Haven't read all the replies, I hope you get some answers. I know how stressful it is. I had this with two of my babies - with the first, I never had a satisfactory answer though later on he was treated for reflux. My third child had the same breathing issues as a newborn. I realised it was related to feeding and we eventually got her onto prescription formula (too late for breast feeding by that time.)

Your baby needs checking thoroughly by a pead to rule out other causes, but they are useless with allergies. If no serious issues found, go totally dairy/ soya free if you're breastfeeding or if not/ if this is too challenging (and it may be - DON'T whatever you do beat yourself up about this - a poorly baby is mega stressful) push the doctor for prescription formula. This doesn't seem to be uncommon but hospitals seem to be totally oblivious - they rule out the serious things and don't care about the effect on mum and baby 😓 Look after yourself and remember if it is an allergy, prescription formula is there to help you. By the time we realised, baby and I were so ground down - in fact I still feel the repercussions from the stress of the first undiagnosed one and he's 14.

I would suggest that it the issue settles it is not necessary (and unrealistic to expect) extensive investigations such as echocardiogram, swallow study, SALT review etc. These simply won't happen and don't need to happen in a baby with normal examination and a resolving problem. Blue episodes whilst always worth some investigations, thorough examination and some period of observation are relatively commonplace the majority of infants are healthy and normal. I also absolutely would not advocate dietary exclusion for unproven allergies at this point.

Baby is only 6 days old, time is the best diagnostician at this point. And thorough clinical examination. Approach should not be to do every test under the sun but to pay close and careful attention to the baby and what they are doing. Some responses are likely to make you feel unnecessarily anxious here I feel.

Very sensible posts from @KidsDr which absolutely nails it and hopefully reassures you OP.

KidsDr - if you are if fact a kids doctor, you'll know that dairy allergies in infants are never 'proven' or rather, they are only proven by excluding dairy. Rule out the serious then consider the obvious is the way forward. My first 'healthy and normal' child suffered for years due to this dismissive attitude. It's endemic in the NHS which makes me think you probably are a real doctor.

@KidsDr is absolutely correct t in her post.