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Childbirth

Share experiences and get support around labour, birth and recovery.

Midwife error?

33 replies

TheUmpire · 01/11/2021 18:57

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?

OP posts:
Flowersintheattic2021 · 02/11/2021 10:55

Creon not creen

umberellaonesie · 02/11/2021 11:22

@Flowersintheattic2021

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
This is not a fair summation of CF now days. There is every chance with good treatment that they will live a full life. My son is 16 and has CF and attends school, has a full social life. Plays sports. He Is a very normal teenager who also takes lots of medication, does daily physio and has regular hospital stays. His father and I both work full time. We have also both worked part time over the years.
Flowersintheattic2021 · 02/11/2021 14:56

Of course they are normal teens and doing everything they want. Your dd will be fine. Some hospital stays are long roughly 2 weeks sometimes. However you can also do outpatients as well. I'm coming across wrong here and I'm not intending to. But both working full time with a child with cf won't be easy. Maybe part time if you have good family support. When I worked with adults with CF they was told not to mix with other cf incase they caught cepacia. Is that not the case now xx

umberellaonesie · 02/11/2021 16:05

@Flowersintheattic2021

Of course they are normal teens and doing everything they want. Your dd will be fine. Some hospital stays are long roughly 2 weeks sometimes. However you can also do outpatients as well. I'm coming across wrong here and I'm not intending to. But both working full time with a child with cf won't be easy. Maybe part time if you have good family support. When I worked with adults with CF they was told not to mix with other cf incase they caught cepacia. Is that not the case now xx
Mixing with other CF people is definitely still not recommended. But honestly telling a family that has a new baby they will need full time care their whole life is unrealistic and scare mongering The new drugs available are life changing and early diagnosis is changing lives. My son has not had a hospital admission for 7 years. The life expectancy my son was given at birth has doubled in his life time due to new management and drug regimes. What was your role working with CF patients and how long ago was it? As your experiences certainly don't reflect our familys over the last 16 years.
Starcaller · 02/11/2021 16:19

Best wishes to you and your little one, OP.

There are some amazing CF drugs available now. My friend with CF was close to death, it's no exaggeration to say. She was in hospital for what we thought would be the final time, when she was tried on a new drug that had shown promising results in trials etc on compassionate grounds. It has honestly been a miracle. She went from planning her funeral to doing a sponsored mountain climb and is now living a totally normal life. I can't quite remember the name, Kafrio(?) or something. But it has honestly been a miracle and I believe it's being rolled across the country and will change the lives of thousands of people with CF. So it seems very hopeful that your little girl will benefit from the amazing new treatments and live a great life. I wish you all the best with her recovery Smile

TheUmpire · 02/11/2021 19:11

Thanks again to everyone for your input. The thread has turned into a CF thread, lol, which wasn't my intension but I'm glad - because you have all given some useful information (I have read all with great care, and will re-read a few times, as will the other half) thanks!

OP posts:
umberellaonesie · 02/11/2021 19:33

@TheUmpire

Thanks again to everyone for your input. The thread has turned into a CF thread, lol, which wasn't my intension but I'm glad - because you have all given some useful information (I have read all with great care, and will re-read a few times, as will the other half) thanks!
Good luck with your little one. The CF Trust have a great help line and a wealth of information. There are also lots of CF groups on Facebook which are great for sharing experiences and finding out about different treatments.
Tablechairlight · 08/11/2021 21:36

I have not read all the replies but from your responses please do not blame yourself. Often people quote if baby has not passed poo in 24 hours that’s when help should be sought.

The risk of a late diagnosis of a blocked bowel is sometimes blockages can lead to bowels bursting because of the build up of pressure behind the blockage- but it doesn’t sound like this happened?

What happened was a Meconium ileus. Meconium is the stuff all babies have in the bowels from their time in the uterus and pass it when they are born- it’s a black sticky and tar like. It’s babies first poo.

Your babies poo because of the CF will be extra extra sticky and this is what got stuck and caused the bowel blockage not all the milk it had after birth. Unfortunately if it doesn’t clear with fluids, laxatives etc which it sounds like you had sometimes surgery is needed to remove the blockage to save the bowel

Whether the delay in diagnosis led to the operation and whether the operation was avoidable is impossible for anyone on here to say without knowing all the ins and outs. Why not organise an appointment with your surgeon in clinic to discuss this? They can review the notes and advise their opinion?

The good thing is CF care has revolutionised over the last few years their are new drugs on the market that have changed the face of CF care.

I think in the future when you have had time to overcome your acute challenges a letter and discussion with the midwives is really important for you and for them.

I don’t think you as parents should expect yourself to have known or done anything different. Good luck and best wishes to your family xxx

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