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

Dietary exclusion at 6 days old could cause more harm than good.

Dairy allergy mainly occurs in formula fed infants and produces persistent symptoms of some kind. Not necessarily all symptoms but crying/back arching, refractory reflux, disturbance in stools, rash, poor weight gain and blood in stools. I always consider dairy allergy in infants with any of these symptoms. But to immediately manage every single baby with any of these symptoms as dairy allergy through exclusion diet or specialist formula would have the following effects:

1. Decimate breastfeeding rates
2. Increase the incidence of persistent dairy allergy
3. Result in completely unnecessary dietary exclusion and subsequent massive expense and inconvenience to parents, nutritional impacts on children, prescribing costs etc

What's dismissive is to tell a new mum that she can just completely exclude dairy and soya on the chance the baby has a dairy allergy, as though that's easy. Or just to switch to prescription formula as though breastfeeding is totally irrelevant. This baby is 6 days old, and had no blue episodes during the last period of overnight monitoring. You are jumping to dairy allergy because of your personal experience and your advice is over the top.

OP, I had a very prem baby and we had a similar issue- turned out that the acid in her stomach was getting into her lungs and causing her to stop breathing; it was something to do with a flap? I'm so sorry I can't remember specifically, I'm going to see if there is anything written in her red book. She came home with the issue and we had to learn to deal with it for about 9 months with positioning and medication.

Why not? Wards are noisy and so are poorly babies. I’d never have managed to sleep without earplugs to block out the beeping.

I handed out earplugs to parents last week. We had another parent with horrendous sleep aponea, and I wanted them to be able to sleep.

Being ‘anxious’ is exactly what saved my sons life. I was repeatedly told there was nothing wrong with him as he went blue, set off the sat alarms etc and that he just ‘had a difficult birth’ and that I was ‘being over anxious’ and that he was ‘fine’.
I refused to accept that and after another blue attack it was discovered that he had a very significant heart condition with various other issues. If I hadn’t been ‘anxious’ he wouldn’t be here.

@Potentialmadcatlady

I'm so sorry you've had this experience.

This baby has not been dismissed, they have not been sent home. It sounds as though as a starting point they have been closely monitored overnight with no further issues (although of course, we may receive further updates from the OP).

It is of course very important to carefully consider an important cause for blue episodes in such a young baby. And to do so in a safe, monitored environment.

I am only trying to offer the perspective that it is very possible the baby does not have a life threatening heart defect, tracheosophageal fistula, cow's milk protein allergy, seizures, unsafe swallow etc among a cacophony of voices suggesting each of these frightening possibilities as the most likely/important thing based on their individual personal experiences.

The OPs description of their baby's blue episodes has triggered your memories of the frightening and horrible experience you had in which you were dismissed.

But their baby is not your baby. And if they don't have a heart defect or any of those other conditions mentioned, at some point they will have to go home without a specific diagnosis.

Going home without a specific diagnosis is the outcome for the majority of babies with brief blue episodes. It's simply the truth.

If the OP gets to that point (which of course I have no way of knowing other than through their updates like everyone else), then terrifying and certain warnings that they must continue to pursue investigations which will not realistically occur because they are not indicated, become harmful to the OP.

A thorough examination, an adequate period of reassuring observation, and observing carefully and closely what the baby does and how symptoms progress is much more important than any single investigation. If this happens, bad things are picked up and then investigated accordingly. I'm not at all trying to suggest bypassing this important process and or that the baby does not need to be safely monitored whilst it takes place.

Hello @KidsDr , I think your posts here are excellent and Im so glad you came by to write to the OP here. However, I do want to defend myaelf a little here (I get your posts are not talking exclusively about me, I had the baby with OA-TOF). Perhaps I didnt word my original post the best, but I described my experience because the OP asked 'does anyone have experience of their young baby turning blue?' And I sadly do, that was my experience. However I did say it is very unlikely they have OA-TOF (My baby for example had already had many tests are surgery by 6 days old, im really glad OPs hasn't). I tried to say (perhaps badly worded) she is fine now. It'd be a lie to say we dont still have to go into hospital, we went two months ago because she turned blue again at 4 years old, but it is thankfully very rare now. She is thriving. My main points to the OP I was trying to make were, these are strategies I used to cope with the turning blue situation (I had to develop other ones for the other problems she had I didnt go into!) and that if something is wrong, she is right to seek medical advice in my opinion. I have taken my daughter to hospital many times when things weren't right, sometimes they find something something sometimes not and often if not (like the last blue episode -no cause for that one) I worried I was bothering them but they have always been really kind and reassured me I was right to check in. Other times they found things sadly they didnt know were there, but they were able to help my baby and wouldnt have found them if I hadnt taken her. I know how terrifying and lonely it is to be sent home with a baby that turns blue and there is no cause, but you are left as Mum with the responsibility of making sure it doenst happen again or if it does catching the baby in the act and saving them with cpr. For the rest of your life, in my case. It is so so hard on you mentally, im sure you appreciate. So I just wanted to try and help OP with some strategies and say 'this happened to me, taking her to hospital was the right thing to do, she is fine now'. OP, Im sorry if I scared you in any way, its wasnt my intention but I do want to just say, you are doing absolutely the right in my opinion thing seeing the doctors in hospital and getting their advice. I am glad there is a doctor here advising you as well as the ones in hospital, and im really glad odds are it is nothing. I really sincerely hope they advise it is something small that resolves itself quickly. And if, massively unlikely, there is something further found is Mums of sick children are so strong -you will find the strength, it just comes somehow even though you are so scared, and you will protect her.

Those of us with trauma etc. (I have it for sure and have been treated multiple times for it) with very sick babies that turned blue might have overshared perhaps by discussing our experiences, but at the same time I feel for all of us because we were those rare people they actually happened to, and not being able to talk about them for much of our lives in case we upset anyone, even if we are still living and dealing with the responsibilites and upsets daily, is incredibly hard. We don't get a choice not to know these experiences. Some of us likely carry a lot of anger (I dont thankfully, but I am anxious and moved my whole life to be near the hospital my daughter has her surgeries at to make attending and short stays simpler). It is not easy for us. I meet a lot of these Mums frequently in children's hospital. Everyone deals with it differently. So i kind of feel a lot for the rest of you on this thread too.

Going to delete my account now, as I don't think I can really talk about this anymore, sorry. My fault to read and respond, but it is taking too much energy and upsetting me too much, and Im pregnant with my second, who I am also very anxious about. @KidsDr again no offense meant, i think your advice here is excellent. Just couldnt bear being told again here one more time 'don't talk about it, it upsets the rest of us'

Whiskey I hear you and you don’t have to justify yourself at all. I wish you all the very best with your second baby- I had two, my other other has no health problems ( just to give you a little hope).

I too will not justify my response to the OP. It is nothing to do with the memories or trauma experienced by myself and my son. The OP asked for help/advice and we gave it from lived life experience not from a doctors point of view.

My baby was checked by three doctors and observed and I was declared an over anxious mother and sent on my way. I took him to GP for various issues but he read my hospital notes and also sent me on my way. My midwife wasn’t happy and four weeks later ( having been at home dealing with a sick baby and not getting any help) my health visitor wasn’t happy either. She gave me the advice that saved my sons life- she told me a Mother always knows if something is wrong with their child and to fight for him. So I did. He had another blue episode that afternoon and I took him to a/e ignoring the advice that I had been given by various doctors who had told me ‘I was just too anxious’.
He was admitted as an emergency via a/e but again the doctor on the ward told me it was fine and he was fine.
He wasn’t.
I know it doesn’t happen to every baby- I don’t need to be told that- I know my experience is just one instance ( although I have met many parents along that way who it also happened too) however one experience is one experience too many.

One simple non invasive test later and my son was upgraded to the ‘sickest child in the hospital’ , my orginal midwives came to visit him and to finally apologise to me for the weeks of being told ‘it’s all in your head, he will settle, he is grand’. Weeks later when we arrived home my GP arrived at my door to apologise also.

My son is alive because I listened to my gut instincts. It wasn’t the last time I had to stand my ground for him.
‘Parents know their child best’ has saved his life on no less than four occasions when I have been told he was fine, I have known he wasn’t and his consultant overruled other doctors. On each of those four occasions he has needed life saving surgeries.

I am very well aware that in some/most/lots of occasions nothing is wrong or it’s easy sorted however I stand with those mothers who are told nothing is wrong when in their gut feeling they think there is. In one of the major hospitals my son attended his laison nurse told me ‘it doesn’t matter if I think you are right or wrong, my role is to support you and your son’ A lot of doctors would do well to take that advice onboard rather than being patronising and simply dismissing the mother if she is worried.

I wish you all the very best OP. I hope your little one is one of the many and settles but if they don’t please fight for them. I would much rather be known as an ‘over anxious’ mother with a healthy child than one who doesn’t listen to her inner voice.

@Whiskeyinthejaro
I'm so sorry, I was too defensive and came across as critical of the parents sharing their experiences. There's nothing wrong with sharing experiences and you are quite right it may indeed have been of comfort to the OP. It wasn't fair of me to do this. I think all of us here are on the same page of wanting to help and support the OP and that comes across. I hope you are okay and wish you the best.

My son has tracheomalacia which is a floppy larynx. Before we left hospital we were given a class on CPR and resuscitation. He also had oesophageal atresia so when he was first born he aspirated milk into his lungs and went blue, this was undiagnosed at first. I would get a SAT monitor for home and absolutely be asking for further tests and to be admitted. It is so horrible and I'm sorry you're going through this. I hope you get some answers soon.

KidsDr - did someone tell the OP to immediately cease dairy and soya without advice? I didn't see that. I do wish that Doctors would listen (and read) Patients are the experts; listen, observe, then apply your training.

Sadly this doesn't happen and no-one on here can tell the OP what the problem might be. She has wisely asked for others' experiences. Other mums are experts. I've learnt so much from threads on here and am happy to share my own experiences. Allergies can cause breathing problems and blue episodes, as can many other things but I don't have experience of those. Once more urgent conditions are ruled out, the OP may want to press for allergies to be considered. Unless things have changed drastically, its not something the NHS will take particularly seriously (KidsDr being the case in point). Of course, there are far more urgent concerns, but an allergy can be a hellish and a completely unnecessary experience for mother and baby to endure. Despite how common dairy allergies are in newborns, the ignorance on neo-natal units is staggering. Unfortunately we cannot always rely on the NHS, forewarned is forearmed - awful it should be that way but there we are.

@Challengemonica

Yes, you did. When you said:
"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 isn't good advice in a 6 day old baby with resolving symptoms. It would be good advice if symptoms consistent with dairy allergy persisted over time but at present you are overstating the odds of dairy allergy because of your personal experience.

I think it is very unreasonable of you to categorise me as dismissive of dairy allergy on the basis that I don't agree with immediate exclusion of dairy in a 6 day old with objectively few symptoms of dairy allergy. I am also a mum and one of my own children had dairy allergy and I am very familiar with it.

I think she was suggesting for the mother to go dairy/soya free rather than the baby so it doesn’t end in the breast milk.

It is no so outrageous, really.

@MeMySonAnd1

Yes I understood that. Though the purpose of a breastfeeding mother going dairy and soya free is for her baby to be completely dairy and soya free. And when the poster refers to prescription formula she is talking about a hydrolysed or amino acid formula, for the purposes of the infant not being exposed to cow's milk protein.

At this stage, this is not good advice. It potentially has a really big impact on the breastfeeding mother or ends the breastfeeding journey altogether. It also has the effect of increasing the likelihood of persisting allergies to cow's milk and soya proteins. This advice should be given when there is reasonable evidence of symptomatic cow's milk protein allergy (eg the benefits outweigh the downsides) not when a single symptom, which could have many other causes, and may well resolve, has been present in a 6 day old newborn.

No it's not "outrageous", I'm not outraged. I appreciate the advice is coming from a good place but it isn't good advice, that's all.

My daughter used to aspirate. The swallow study is called a video fluoroscopy. If you have no luck in hosp ask your gp to refer you to speech and language for them to assess one of his feeds. Our slt was truly amazing. Good luck x