Midwife error?

[TheUmpire]

I'm the dad of a 5-week-old who has CF and a stoma bag, following an operation to remove a blockage. We are told by the CF team that the operation is fairly rare, as typically this blockage is removed without an op. We now think this could have been avoided had a particular midwife done a better job.

Our daughter was born at a birthing centre one Thursday at about 2pm, and brought home that night at 10pm even though she found it hard to keep her food down. We were told this can happen, but not to worry too much as a midwife would come to ours and do a check at 24 hours. The following day a different midwife arrived 11.30am and spoke to the mum, asking if our daughter had had a number 1 & 2. She was told that our baby had continued to vomit some of her food after each feed, hadn't yet done a poo but had done a bit of a funny coloured wee. The midwife said this wasn't out of the ordinary, made an appointment to return on Monday, and said to ring if we were worried. Well, we were worried - because the baby continued to vomit after each feed that weekend - but we didn't ring the midwife or attend a hospital since she said being sick wasn't uncommon. And we put the non-poo down to the fact that although she had consumed some of the breastmilk, she hadn't yet had enough to make a poo. We also knew she would be returning on Monday, so hung on.

There was another reason why we didn't ring that weekend. I knew a friend of a friend who was a midwife, so had them text about our problem. You know, second opinion and all that. She reiterated that it was not uncommon for babies to vomit for a few days, and not to worry too much about not pooing but to wait and see what our midwife had to say on Monday (since this time she has admitted that she was erroneously under the impression that our baby had already had a dark poo in the birthing centre, or would have told us to go to the hospital).

A different person came on Monday and asked the same questions - and got the same answers. She then disappeared and we later got a phone call from the midwife who had delivered the baby. She said we needed to take the baby to the hospital right away, as by 24 hours she should have done a really dark poo, so now, 4 days later, she possibly had a blockage (that was the first time we knew anything about a blockage).

At hospital they decided to operate, but only after five days of trying to remove the blockage without going under the knife (during which time they starved our daughter of food - but gave her fluids - and her mum had to sit there and listen to her cries for food 24-7).

Now we have to constantly listen to our daughter's screams whenever we change her stoma bag, and we can't help but think the original midwife who came on the Friday is in some ways responsible. Apparently if there is no dark poo after 24 hours, you have to go to hospital. We weren't told this, and so instead of the hospital having to remove 24 hours of food blockage, they had to remove four-days worth, hence the op. Note that the birthing centre's line is that the midwife came 22.5 hours after the birth not 24 hours, so she didn't give incorrect advice! They also have conveniently forgotten which midwife it is.

I feel like someone in authority should speak with this midwife, who really should have told us to go to hospital. Sure, we could have rang the birthing centre that weekend or taken the baby to the hospital (and don't think we are not consumed with guilt about that) but we are lay people who know no better when it comes to the technicalities of birth. Your thoughts?

Im sorry your baby has been ill.

But your post reads like you are looking for someone else to blame when really you should have followed the original advice to call up or get seen again over the weekend if things didn't improve/ you remained worried.

Texting a friend who has never seen the baby is not a medical review.

Hope your daughter improves

I think they are all at fault tbh as a baby should be pooing from day 1 and should not have been left for that amount of time before checking things out

And as you were worried over the weekend you should have contacted the midwife as she had directed you to do if your baby still had issues

Sorry your daughter is unwell.
And congrats on your new baby girl!

You said;
since this time she has admitted that she was erroneously under the impression that our baby had already had a dark poo in the birthing centre, or would have told us to go to the hospital

So she has already owned up to not correctly understanding your daughter hadnt done a poo at all.

Unfortunately it's been a miss-understanding but I totally get why your upset as I would be too.
You continued to worry over the weekend when really you should have rang or went to hospital.

I agree, sorry about your daughter but you were given advice to contact them and didn't follow it through.

I’m really sorry your baby has been so ill.
In my experience you have to be fairly proactive in getting help for your children. My second was basically shitting herself to death and nothing was being done about it. I suggested a few things it could be they ran some tests, tried some different things and it was one of the things I suggested. It is exceptionally difficult to think logically when you are knackered hormonal and have a new baby.
It does sound as if better advice could have been given so you knew to seek further advice sooner.
I hope they can join your daughter back up again so she doesn’t have a stoma in the future (I have a close relative who had a bag for a couple of years during their teens and was joined back up)

God this is really horrible. Sorry you had to go through this. I think you have been let down but it's more of a catalogue of errors. I think the best thing is to not look for blame. Not yourselves, not anyone else. Ask for a review as it could lead to better advice in the future and save someone else from going through this. But forgive, and focus on your baby. I absolutely know that's easier said than done.

I agree you’re looking for someone to blame besides yourselves.

I can’t imagine how you must be feeling, and I’m so sorry this happened. It’s hard feeling inexperienced in these things and at the mercy of someone else.

Will your baby girl always have the stoma bag? Or will she eventually be healed enough to not have it?

Aw, I’m sorry to read this. How stressful for you.

I think it sounds like a series of unfortunate events. I’m not going to say that you should have sought medical help because when you’re new parents and medical people tell you things are normal, you barely know which way is up and so you trust them. That was something i found so challenging as a new parent - when to get help, and when not to worry (out of hours service will testify to that).

I hope you and the baby’s mum are alright

I am so sorry for your situation. It must have been a terrible shock to discover that your baby has cystic fibrosis, and needed an operation. Do they know if the stoma will be able to be reversed at some point? Fingers crossed that it can.

Not having opened bowels by 24 hours wouldn't necessarily always mean a trip to the hospital. But not having opened bowels by 48 hours definitely would. The thing that could be potentially criticised would be if the midwife didn't tell you about the 48 hour deadline. I wasn't quite clear if it was the actual midwife who didn't realise that your baby hadn't pooed in hospital, or the random acquaintance midwife - the latter not having a duty of care.

Meconium ileus is pretty uncommon, so I wouldn't necessarily have expected a midwife to know about it. But I would expect them to know about the 48 hours time limit.

Would picking it up sooner have made the difference between surgery or not? Hard to tell. Most of the blockage is meconium, which is the black tarry poo the gut makes before the baby is ever born, and is rather thicker than normal poo. So feeds causing actual poo to be made higher up the gut would quite probably make little difference, as that sort of poo is much less likely to block anything. But the team that has been treating your baby would have a better idea about that than we can.

I would suggest that a starting point would be to approach PALS, and they can try to gather some of the information for you.

I find myself missing the days, 20 years ago, when the baby check was done at 24 hours and the baby didn't leave hospital until they had fed, passed urine, and opened their bowels. But that goes totally against the modern way of trying to get mums and babies back home.

Having worked with people with cf. Most are diagnosed following blockage surgery

Also keep her away from other cf people. You don't want her catching cepacia. Work out hospital routines and also one person will need to be baby's full time carer permanently

Google cystic fibrosis charity Very helpful

Congratulations on the birth of your daughter!

I am sorry to hear of the complications you have all experienced. It’s awful that the NHS and midwives in particular are stretched so thin at the moment that continuity of care is almost impossible. In an ideal world there would be at least some continuity with midwives - this didn’t happen in your case (indeed doesn’t happen in most cases) which seems to be why nobody picked up on the fact your baby didn’t pass meconium.

It is so hard as a (I’m presuming) new parent to know what you need to look for. Antenatal education should be much more strongly encouraged - if you can do Nct classes or similar you will learn to expect meconium, know how many wet nappies in 24hrs is normal etc. Not very helpful for me to say now I’m sure but perhaps not too late to do some googling on what to expect in coming weeks. Also - The midwife and health visitor teams are normally very good at encouraging you to phone if you are worried about anything - in my experience they do really mean this and would rather you phone even if just for reassurance that something is normal.

Good luck to you and your little girl

Sorry you are all having such a terrible time. Meconium ileus is most common in CF sufferers (around 90% of cases) and often leads to CF diagnosis. Is this what happened in your baby’s case?

Hi OP, many congratulations on your new baby, but so sorry to read what you and your partner have been through in terms of her CF and surgery.

I don't have any directly relevant experience in terms of her medical needs but I do well remember the terror, overwhelm and spiralling thoughts in the immediate aftermath of the baby's arrival. Please seek MH support if you need it, and encourage your parter too also - new parents are a very high-risk group for MH due to the frequency of traumatic birth events.

Reading your post above my reaction was that there were a string or errors, due to lack of continuity in your care and mis-communications and mis-understandings. This is really common and happened with my first born too, though he had no long-term effects it was a horrible time. I desperately wanted someone to blame and punish so I could feel better - I think the responsibility sadly lies with the politicians starving the NHS of cash in a bid to move the UK to insurance-based healthcare... which doesn't really help much.

In your shoes I'd probably seek some closure through the PALS/Birth refections service at the hospital - contact the midwife team in the first instance to find out who to escalate your concerns to. It's unlikely I think that they'll single out an individual but perhaps some good will come of you feeding back your experience. Secondly consider seeking MH support, some CBT or similar, to try to avoid spiralling thoughts that can eat away at you and stop you being present with your new baby.

I really wish your family well and hope that your daughter will be able to regain her bowel function. I'm sure even if that's not possible that she'll have a full and happy life. Best wishes.

My son has CF.
The baby was born with the blockage it is called echogenic bowel. So it is unlikely the breast milk caused the blockage.
However the midwife should have insured that your baby had passed meconium ( the black tar like poo which babies are born with) within 24 hours.
Give your CF nurse a call a ask her to go through the reasons your baby was born with a blockage.

I am not medical but I don’t think the midwives were unreasonable in their actions - common things are common. Your baby initial symptoms don’t sound that uncommon, it’s just that very rarely in this case they actually did have an unusual cause. A baby presenting with a common symptom would not immediately cause a midwife concern. I think they actually picked things up pretty quickly.
I do agree that, very understandably, you are deflecting your feelings of distress onto the professionals involved.
I must be very upsetting for you all.

Very low standards here.. You are not a medical professional and when someone who is supposed to be qualified tells you it is common and not to worry you are exp9to believe them.
I would complain. Your daughter at the very minimum hasn't received a continuity of care.

Thank you to EVERYONE who offered an opinion, even those who are saying we are at fault because we didn't follow up on the midwife's "ring me or the hospital if you are worried". You have a point of course, but what you are not gleaning is twofold. Firstly, as much as she had said "ring me or the hospital", the overwhelming impression we were given was that our baby's condition was nothing to worry about, and that phoning her or the hospital would only be an exercise in wasting their time. More importantly is what a couple of you most certainly did pick up on: it is her duty to inform us about the time period for not having passed a proper poo. I have learned that she should absolutely know this and should absolutely have told us. Had she done so we would have been beating an instant path to the hospital. That said, I do agree that I shouldn't be looking to blame but rather to ensure that in future she (and all midwives) tell parents about the poo deadline. Thanks again everyone, ALL your comments are very, very appreciated.

Other stuff...
No, the stoma is thankfully not permanent, and I've learned my lesson for the person who said: "In my experience you have to be fairly proactive in getting help for your children" - We have been told that the operation can be reversed after six weeks. However, even though there is now less than two weeks to go, there is no operation scheduled. Why? Because before he went on holiday, our surgeon forgot to send in the necessary forms. I only know this because rather than wait for a letter through the post, I actively rang around until I spoke directly to the person in charge of scheduling the operating theatre. After some pestering, he is now trying to sort it out without the surgeon's form. I'll keep pestering until they do.

Op, so sorry to read about your situation. Our midwife was very clear with us to phone the hospital if our DD still hadn't had a poo at 24 hours old. At 24hours we phoned the hospital, they asked us a few questions, but said to phone back in 12 hours (6 am) if she still hadn't and they'd bring us straight in. We were even asked to check if she had a bum hole. Thankfully, around 34 hours old she had her first poo.
It's very difficult as you should have really been given this advice on your first home visit but agree midwives are incredibly stretched at the moment so I wouldn't want to place blame on a specific person.
Re the vomiting, that sounds pretty normal, both of my children have been like this in the first few days getting rid of mucus.
I hope the operation goes well and congrats on the baby. Our DD is six weeks and I can't imagine having to go through it.

As the parent of a child who has spent a significant amount of time in hospital, and as a mum who had a totally disastrous birth, I want to send support to you and acknowledge just how hard this is. I know the desire to find blame and understand why your child now has to hurt in the way they do.

What I'm about to write isn't right, or fair, but it is the unfortunate state we are in now. Do not ever rely on what any one person tells you. Google everything. Read scientific papers on it. Ask for a second and third opinion, every time. If it feels even slightly not right to you, then you need to push it. You have to advocate for your child because unfortunately the NHS sure as hell is not in a position to do that right now - or at least not consistently, every time.

People make individual mistakes, but this isn't about that midwife (and you'll get nowhere with your complaint so I wouldn't waste your energy). This is a system that is broken and the only person your child can rely on is you. You won't always make the right choices, but you need to be as informed as physical possible to make the best possible choices.

The grief over the early days will lessen but it won't ever go away. EMDR is the only treatment to reduce my flashbacks and hot boiling anger about what happened to me and my daughter. If you're still feeling this way when your daughter is a bit older, consider sourcing someone to do this therapy with. Your wife can access support through the perinatal mental health team.

Congratulations OP on the birth of your beautiful baby!

Please ignore @Flowersintheattic2021 saying that one person will need to be a permanent full time career. CF care is very different now and this is not necessarily true. There have been massive advances in treatments and especially for babies born today we are starting to talk about potentially fairly normal lives and life expectancies in a lot of cases. I agree with PP about being informed but do be careful on Google as a lot of CF info is out of date.

My DS was also born with meconium ileus and needed a stoma. He had his surgery at 2 days old, they couldn’t unblock it without the surgery. This might well have happened anyway for you although that doesn’t really make anyone feel any better. Meconium ileus is more common with some genetic mutations in CF than others. It does sound like there could have been more clarity about when to worry and if she had passed meconium and it’s reasonable to feed this back or ask to go through it with someone.

DS had his reversal done at 15 weeks. We actually had a similar issue with not being booked back in for reversal and he also got unwell in between. He’s now an entirely normal looking little boy. He loves nursery, we go on holiday, we go swimming, we laugh and have fun. We’ve had a few hiccups and of course we worry about him. My DH and I both work. We still do physio and treatments. He’s recently started on one of the new drugs. I never thought we’d get into a routine of managing and not thinking about the CF all the time but we have. With the new treatments his future really does look bright.

Having a tiny baby with a stoma is hard, they’re so tiny the bags don’t really fit, the salty CF skin makes it harder for them to stick as well. People with healthy babies talk about struggling to get out of the house in the early days and this is a whole other level. Not sure if you are at home or in hospital at this point.

I recommend getting the skin really really dry before applying the bag - use a hairdryer. Also use the hairdryer to warm the bag up and make it a bit softer before sticking it on. We found using brava elastic tape (Banana shaped stoma plaster) helped them last a bit longer too.

Get your CF nurses to help you apply for DLA - I think you need to be 12 weeks old for this. We also have funding for IVF with genetic diagnosis to try for a second. May be the last thing on your mind but there are options.

You are grieving of course. Try to enjoy her too. Be kind to each other and yourselves. It sounds like you’re doing an amazing job and really don’t think you should be blaming yourselves.

Thanks again to those who have recently added to the discussion, some excellent advice.

If your in and out of hospital. Peg feeds cpap bipap croon, insulin. It will be hard to work full time. But then again I did work with teens and adults.

Make sure u put in for dla for her and carers allowance as well. Xxx