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

get ear plugs for you so you can try and rest

I can't believe anyone would suggest this.

OP, you are doing all the right things.

Yes @Puddlelane123 CCHS is the condition I was trying to think of. It might be worth asking about @Sleepingallday, you have advocated for your baby so well, I hope you get some answers soon.

Agree with PP’s, do not leave the hospital without being thoroughly assessed by cardiology. My daughter had an ECG, echo and an ultrasound scan to ensure her heart was structurally normal as a tiny baby.

Sounds like a heart defect

I don't have any advice but sending love to you and your beautiful boy. You are in the right place, don't let them fob you off and send you home. Sending love, look after yourself as well, as others have said. I echo that he's already got the best Mum doing her best for him! Lots of love x

DS1 (now 5) was admitted to SCBU (via A&E and then maternity) at six days old, having been discharged home previously. I don't know if NICU is different, but I'm very thankful he didn't have to go to paeds.

I notice you say ’wee boy’ are you by any chance Scottish/Glasgow and in sick kids hosp?

I would also suggest- as someone else has- floppy larynx or laryngomalacia

so sorry OP- best of luck!

My nephew had similar and he had heart problems. He has needed several heart surgeries but is very healthy now.

No advice, just solidarity as I've been there with a poorly newborn.

@Mmmm19 I'm a paediatric nurse. In a large children's hospital. They go to the paediatric wards. For infection control reasons. NICU also doesn't have the capacity or the staff for readmissions.

My nephew did this to my sister a few weeks back, he has a floppy larynx room. His cot alarm went off, and probably saved his life

Don’t let them fob you off OP.

My DS also has a heart defect and used to go blue. All ecgs showed up as normal, it was the echo which showed it up. Push for every test you can, this is not normal.

Good luck 💐

Happened to dd. She repeatedly stopped breathing and went blue as a baby. It was cows milk protein allergy causing it. Are there any signs of digestive issues or a particularly unhappy or unsettled baby?
I'd definitely demand to see a specialist, that was the only thing that sorted it out for us.
I used a breathing monitor that clipped onto her nappy to alert me if she stopped breathing until it was diagnosed.

Also recommending all the heart checks for a heart defect. Listening to the heart and ECG won't necessarily show up anything. You need the ultrasound scan of the heart.

My son did this when he was just born. It happened about three times, sensor pad alarmed I would run in, he would be blue. Pick him up and he would come back to normality. When it happened twice I took him straight to a&e, the monitored it happening but could not find a cause. Never did find out why.

It was horrible, mostly because it leaves you feeling like “what if” and what if next time I don’t get there. I hope they find the cause and get things moving, definitely hospital is the place to be.

I had this with my DD - in her case it was an ex prem issue.

advice for when you’ve ruled out absolutely everything as per suggestions above: under sheet breathing monitor and a clip on halo alarm for when not in cot. We also elevated her mattress ever so slightly so her head was raised about 10 degrees : you’ve got to do this safely with slim blocks under cot legs. This was to help with possible silent reflux and at the advice of the paeds consultant

My friend's baby used to do this. In his case, I seem to remember that it was something to do with milk coming back up from the stomach and pooling at the back of the throat, so air couldn't get through to the lungs. She hardly slept because she was terrified to leave him unattended.

He grew out of it after a few months and is now a very healthy 12 - year-old.

So sorry you’re going through this. My son was born very ill at birth and we nearly lost him too. We invested in an owlet sock and camera for when he came home and it was the best money we’ve ever spent. When we’ve had an ambulance crew out for further problems with him they’ve always taken the owlet reading of his oxygen levels and they said it’s more accurate than their monitor x

Make sure they have ruled out a heart condition before you leave. Stand your ground and insist on it. My DS was similar and they wrote in the notes that I was an ‘anxious mother’
Turned out my son had a rare and severe heart condition. I never got an apology but he is only here today because I insisted on them giving him help.

Do you have a regional childrens hospital near you? We've had a lot of cause to need inpatient treatment due to cardio-respiratory abnormalities and unfortunately the investigations and treatment that has been available at the children's hospital an hour away has always been head and shoulders beyond the local hospitals near us (they scared us to death that the children's ward couldn't work a paeds vent as they'd not had call in the last 6 months on that ward and we were asked to help the nurse as we'd seen it fitted in the last fortnight but as non medics had absolutely no clue on the settings she needed) to the point that unless our child is actively crashing our protocol is now to get in the car and do the hour's drive to the children's hospital. If you're not satisfied all is well go elsewhere until you have answers, sadly not all doctors or all hospitals have the same experience, training or resources.

This happened to one of my twins a few times. DH had to bring him round and one time 'sucked a lot of mucus out'. We all 3 ended up being admitted to the children's ward. He was monitored and prescribed gaviscon which seemed to solve the problem. He was born C/S and needed NICU treatment unlike his twin who was born vaginally and needed no extra support. Both twins were slow to start feeding (breast) and had jaundice, too.

My babies all did this - they were very mucusy and I was too attentive and didn't let them scream enough to clear their airways. Two of them were "cured" by a good scream when having their heelprick test. In all 4 of them it resolved within a week or so.

I haven't had anything like this experience but my DD did have severe breathing difficulties for a period which were very worrying. I absolutely echo what others have said - you've done the right thing & you're in the right place. I would definitely keep pushing to see a senior paediatric specialist in the hospital if at all possible.

Once you're comfortable to come home, this monitor is not cheap but it gave us peace of mind as it tracks your child's o2 sats & heart rate whilst they sleep & it has alarms which will alert you to problems: owletbabycare.co.uk/products/owlet-smart-sock

They should be doing more for you!!! FGS