To ask hospital to explain

[Weddingbells6]

My twins were born by semi elective c section 7 years ago. Twin 2 was breech so I was booked in for a c section 2 days later but they couldn’t hear a heart beat for him after I had my 2nd steroid injection (the standard I think if a baby is being born early - I was 36+5 which I know is good for twins). They tried to send me home but I felt something wasn’t right so I called a different hospital and asked if they would see me but they insisted I went back in and tell the midwife there that I wasn’t happy to just go home (I remember them being a bit shocked that I wasn’t staying to be monitored anyway) I was sent to theatre to have the c section early as it really wasn’t going to make much difference when I was so close to term and the babies were a good size on all scans.

Twin 1 was fine. Twin 2 was not breathing and had to be resuscitated with no cause as far as I am aware) Obviously it was a horrendous time for us, not helped by the fact that he was in NICU for a week and I had to push twin 1 from the maternity ward to the NICU and not once did a doctor come to see me where I was with twin 1 and let me know how twin 2 was! I just had to ask the nurses on duty when I went around there after pushing a heavy weight and being stitched up I was never told what time they did their rounds etc so I missed them lots of times and sometimes I was questioned why I was leaving the ward with twin 2 and it was upsetting having to explain that we were going to NICU to see her brother.

Twin 1 now has a diagnosis of autism. Of course this could be a number of causes but part of me can’t help but think that him not breathing for more than a minute could have caused this. When I read his notes from the hospital (only quite recently as I find it very distressing) it states that the doctor was advised by the midwife to use a smaller oxygen mask but (in the 1st person) they didn’t think it was large enough so switched back to a larger one. To be honest it doesn’t sit right, who is in charge in this situation? Surely to write that means it was an issue and it shouldn’t have been? I can’t help
but feel like they maybe didn’t get it right.

Am I unreasonable to ask them to explain why it wasn’t clear who was in charge and for a doctor to make the best decision they could without being swayed by someone else?

Of course it’s a very sensitive subject so I understand that perhaps I am not viewing this as an outsider would so will happily accept kind responses that disagree.

Honestly OP, what are you going to gain via asking questions like this? What’s done is done and there’s no obvious negligence involved. Personally I think it’s just going to bring the trauma back and upset you further.

Firstly im sorry that you experienced this because it's a very hard situation.

NICU is such a hard place to be, and it must have been difficult to have one in and one out but it sounds like you were fortunate that you could bring the other twin over with you- when my son was in NICU there was COVID regulations that meant noone but parents was allowed in which even included twins- I knew of a few families who had only one twin in NICU and they couldn't visit their unwell baby without leaving the other with someone else which I think was so awful. From my experience, the doctors just would not have the time at all to be leaving the NICU to talk to you- they would have called you if there was something urgent but otherwise they don't have the time. I feel like they might also not actually be able to leave the unit unless it's to the delivery room to help a baby there, because if there is an emergency in the unit they need to be there immediately. It was very normal to need to ask the nurses for the most part, although I did attend the doctors rounds too.

Our son was in NICU for a month and while initially I thought I'd want his notes, I realised that it would probably be harmful rather than helpful for me to read them, so I left it.

I'm no expert to know whether the comment on the mask was serious or not but I'm not sure what you would achieve going back over it now? Doctors are "in charge" above midwives.
They had all different sizes of CPAP masks (I still have the little size guide in my baby's memory box) and I don't think it would be that uncommon that they would try a size and then need to swap the size, it might not have actually been a big issue hopefully just something they quickly swapped but doesn't mean baby was without oxygen if they did have a mask it just didn't fit quite right? In fact I remember when my son moved from CPAP to the nasal prongs for his oxygen, she brought out two different sizes to see which fit better so hopefully it was just a situation like that? Different people document at different levels of detail so I'm just guessing here...

I have heard that some hospitals offer the opportunity to debrief so that you can understand what happened in a traumatic birth, I'm not sure if this is an option for you? It's hard to process it all and sometimes things that cause stress might be easily explained to ease your mind.

I don’t think your care or your child’s care is the issue. I also had section and unwell baby needing resus and nicu. No, a dr can’t visit you to give updates. They are needed with the patients. Yes, you need to go to nicu post section. My DH used to take me in first day or so then I did it myself. All normal. There is not staff that’s extra to do that for you. Questioning mask size. Again totally normal. Documentation is clearly good in this instance and they’ve recorded the events fully. The problem is why you are revisiting this now 7 years later. You need counselling as you are clearly stuck processing what happened. See your gp for a referral but it will be likely a long wait. Or go privately. But you need some psychological help.

you mentioned in the op that twin 1 was fine and the recus was for twin 2.
not breathing is associated more with cerebral palsy than autism (which most believe is genetic).
twin 2 ends up being ever so slightly drugged with more anesthetic since he is exposed to the drugs a tiny bit longer while twin 1 is delivered so that is not uncommon. plus being breech (if i have the twins right) he doesn't end up getting his lungs squeezed quite so well as a head down baby which affects the first breaths.
as for the mask size although dr's often trump nurses, nicu nurses might have more experience than a dr assisting at a delivery. often they start recus with a large mask to free flow oxygen towards the face, then if the little one doesn't respond switch to a smaller mask that fits over the face and gives a better seal when actively ventilating the little one.
there is a very well practiced neonatal resuscitation protocol with lots of equipment choices some is personal preference and some is based on the size of the baby.
nothing wrong with requesting a debrief.

It’s quite normal for different sizes of masks to be tried to achieve optimum ventilation, that is nothing to worry about and 1 minute is extremely unlikely to cause any long term effects. Think about how long someone can hold their breath for - on average most people can hold their breath for 60 seconds. It certainly wouldn’t cause autism as that’s simply not how autism works.

It’s also quite normal for collaborative discussions amongst colleagues during a procedure. The doctor will have overall say in an emergency situation but that doesn’t mean they won’t take advice from colleagues where appropriate.

Expecting the doctor to leave the NICU and come and personally update you is just plain silly, I’m afraid. The doctor on a NICU nursery would have probably around 12 babies under their care on any shift. They will take handover from the previous shift, do rounds on those babies, update their notes and drug charts, adjust their prescriptions (most babies on NICU are on an absolute cocktail of meds that are tweaked often to try and achieve the right balance on any given day). And in the afternoon they will do all that again. Where do you think they would have time to leave the ward, find the family of each of their 12 patients, have a lengthy chat with each one, and still find the time to actually do their clinical work? If you wanted an update on your baby you could have just called the NICU, and they’d have given you one.

You can request a debrief of course, but you have waited 7 years so it will be someone reading the notes, not the doctor or midwife who actually treated you as they are likely to have moved on now.

The whole thing sounds traumatic for you and I think it’s really understandable to have questions. I know a couple of people who have had birth debriefs and found them really helpful. They were told some things they were worrying about were standard medical practice and that was reassuring, and other things were examples of their care falling short and I think that was validating.

I have twins too and I think it’s very hard for anyone who doesn’t have multiples to understand what it’s like when you have more than one baby in hospital. You can feel split and like you are failing one or both of your babies. It is much harder to advocate for them and gain all the information you usually would because you can’t be in two places at once. You are reliant on HCP seeking you out and giving you information in a way you aren’t with one baby, which understandably they are often too busy to do. Mothers of multiples are given lots of extra attention antenatally, but IME there is less consideration postnatally and communication can be poor. I think there could be learning in how to support multiple families better in the post natal/neonatal/NICU wards.

I hope you get some answers.

My first was born via emergency csection because her heart rate wouldn't stop falling. I was really scared she wasn't going to make it. She is autistic but so are her brothers and they both had very straightforward elective csections. Medicine isn't an exact science, different doctors can do things very differently from each other and its considered reasonable. A doctor might take account of what a really experienced nicu nurse says and that's fine too, it's not an absolute split of power. As for the time rounds are performed it really is very variable, when I've been in hospital myself I might see the doctor at 730 am one day then 5pm the next, then not at all for a day because they've been dealing with medical emergencies or regular clinics. They likely couldn't tell you when the doctor would be there. I've also had different doctors on different days giving very different answers to what's happening next treatment wise. My youngest was in hospital for a while as a toddler. A comment on trying different size masks really means nothing.

If you think talking to them about it would help Id say do it, but you're not going to get the answers you're after. I know many autistic kids, some have birth trauma and/or were born early, it's not considered to have been related to that at all though. Its not something Ive seen referred too unless in the context of cognitive function or CP or things like epilepsy that have occurred WITH autism, but not the autism itself. I'm sorry for what you and your babies went through, unfortunately as far as answers go I don't think you'll get any, especially 7 years down the track when memories have faded.

I have noticed my hospital do a counselling type service for people who experienced a traumatic birth and want to have time to go through what happened. I would look into whether your hospital does anything similar as I think you need to process what happened.

Most hospitals do offer this service, but not generally for births that happened 7 years ago.

My twins died in hospital last year after an emergency section. My first baby was born sleeping and my second died in the NICU 4 days later. Its so traumatic to have a baby in the NICU. And with multiples, your heart is completely torn. My first baby had already passed away but I felt so guilty not being with him as much when his brother was NICU but that was obviously the grief and trauma taking place. Counselling after traumatic birth is something you should look into as I think you really could benefit from it.

@Ella31 I'm so sorry that happened to you.
Sending love. ❤️

it's actually a sign of a good, functional team if someone felt able to make a suggestion to a doctor that might have improved the situation (and it's not uncommon to use different bits of kit to try and get things as good as possible looking after breathing in an emergency). Doesn't necessarily mean anyone was doing anything wrong at all. (DOI fwiw, am a doctor (anaesthetist) that is usually very happy for sensible suggestions from other members of the team)

I am so very sorry.

How you feel is totally normal but you deserve care and someone to talk to. Seeing yout baby hooked up to machines and wires is so scary. You probably haven't been able to process that. All of us plan to leave the hospital unscathed with our babies. Doesn't always happen though so be good to yourself xxx

I’m a medical negligence solicitor.

Did Twin 2 have active cooling on NICU after birth? Or an MRI head at any point?

Cognitive conditions such as autism, ADHD or sensory processing issues are often seen in children who have suffered mild hypoxic ischaemic encephalopathy (HIE Grades 1-2) at birth. These conditions may not become apparent until the child gets older.

Ineffective resuscitation may contribute to oxygen deprivation. So, it’s possible that there could be a claim if the wrong sized mask was used.

In your shoes, I’d be inclined to contact a medical negligence firm and ask them to investigate.

It's not acceptable that they tried to send you home when they couldn't detect a good heartbeat, and it's not acceptable that you had to push the cot yourself fresh out of theatre, but AFAIK there's no definitely proven association between autism and any of the events you describe.

You would not be unreasonable to ask for a debrief though, as that all sounds really traumatic. This should be available to you, either via the hospital you attended, or a private midwife can review your notes and debrief / counselling for a fee.

sometimes the only way to know if the ideal size mask is being used is to try different sized masks and see which works best.

This is bullshit. It is absolutely normal to try a different size of mask to check for the best fit, there is no implication whatsoever that the wrong size was used. Stop ambulance chasing.

Seems to be the best advice legally- but it’s been 7 years. I’m not sure how far you would get or how beneficial it would be.

As pp suggests I’d pay for a debrief to go over it with someone. Sounds traumatic.

@Ella31 I'm so sorry for what you've been through, I'm sorry for your losses 💔

No he didn’t. I only heard about that after their birth and just assumed it was down to the hospital to make that decision and that it wasn’t offered at my hospital. He had a cranial ultrasound and EEG which were apparently normal. I don’t know what the grade means - sorry.

I think we’re so quick to trust doctors because most of us have no medical experience so how would we know any different? And we are so grateful for the NHS (rightly so) that we don’t ever consider that the best wasn’t done for our children until we read about it on the news. Something just doesn’t sit right with me about it and it’s very difficult to see your child struggling every single day, wondering if anyone (including me) could have prevented it.

I’m not ambulance chasing at all. If OP wants legal advice, I would direct her to the Law Society website or AvMA.

I’m simply highlighting that a child who has required resuscitation at birth may have suffered a hypoxic event as a result, and that could be the cause of the autism. I have plenty of cases involving similar facts.

It’s impossible to tell whether there has been any breach of duty but there certainly appears to be a causal link between the circumstances of the birth and the child’s current condition, It warrants further investigation… I don’t see why anyone would take exception to that. If there’s no case, then OP will be informed not to pursue the matter, but it may get her some answers,

@Weddingbells6 cooling is not without risks and would not be done unless clinically indicated. Apnoea at birth which is quickly restored with no loss of or very short loss of output is not an indication on its own. The fact the Ultrasound and EEG were normal is very reassuring as is the fact that their stay in nicu was short meaning no multi organ failure which you would expect with a hypoxic insult.
Do not listen to a solicitor that is biased on making money from misery for medical advice.
You would be best placed to contact your local
hospital where you gave birth and ask to have your notes explained and they may well do this for you if you cannot move forward. But ultimately you need therapy to move forward as this is not a normal feeling to have after this length of time. Most people have some degree of trauma from nicu baby and there are psychologists attached to nicu that parents are usually referred to. I know I seen one as routine. So your response is not abnormal. What is abnormal is to still feel like this 7 years later, so think about how to move forward. Whether it’s via gp or privately but I really recommend it.

In which case, as a medical negligence solicitor you would know that ASD and ADHD are NOT cognitive conditions!

Autism is developed in the fetus.. so this hasn't caused Autism.
Please remember that . It's a scientific fact.