Take care of Maya

[Cantcopewiththeheat]

Has anyone seen this on Netflix?

How could this have been allowed to happen?
I cried through so much of this

I watched it today, absolutely awful, no none should go through this. But firstly, I was frustrated by Beata - I understand why she behaved the way she did, her attitude was 100% Eastern European - direct and no-nonsense - but she grew up in the USA and should have understood how things work, that you cant alienate and antagonise people in this situation?... The way she way taking to everyone, gosh ((
And also - imagine you work in the hospital, this parent come in with a kid in pain and say they give their child a powerful street drug for a condition that many never heard of. And that she went to another country where she was put in a coma. I mean, it does sound extreme, so naturally it gets investigated. But the real tragedy is that it seems that once the wheels start rolling and people like Sally Smith get involved - you are basically done for. Hospital personnel close ranks and do whatever they can to prevent the case being shown as an error of judgement.
Feel very, very sorry for Beata, Maya and the family. Hope they can get the closure they deserve.

I'm not sure I understand any of your post to be honest.

I couldn't read the entire thread as it is all a bit close to home, but for those saying that there must've been other issues for the mother to be suicidal need to know that if you know your child is ill, and no one is listening, and then they think it's your fault, you can end up in a really dark place.

My experience is no where as terrifying as this, but after years of not being believed, and very definitely being considered one of those parents, and even getting social services sent to check on us (who were baffled and found no issue), I definitely ended up dealing with suicidal ideation.

The only reason I didn't take physical steps is because of what it would've done to my children. If they'd actually taken my children away, I think it would've been a distinct possibility.

Once they found out what the illness was, it was as if none of the awful things had been done or said.

Still dealing with the fallout.

I have known of similar stories of children with severe ME. (I have severe ME). It’s a scary, horrendous thing to happen to the child and parents.
One such case detailed here. https://me-pedia.org/wiki/Karina_Hansen

I understood it just fine 🤷‍♀️

My impression of Beata was that she was very focused on helping her child and perhaps could not see the wood for the trees. I cannot imagine how scared and helpless she must have felt when her child was in so much distress.
She was misguided but I don’t believe she was abusive. There were doctors prescribing the ketamine; she wasn’t sourcing it off the street. I do think it should have been questioned but not in the way it was done. If the medics at JH children’s hospital felt the dosage was inappropriate, they should have been addressing concerns about the doctors who prescribed it!

My heart aches for both children and the father. I hope they can all find some sort of closure and some peace. It was a heartbreaking watch and I sobbed for most of the last half an hour. I cannot imagine what the family have been through.

I felt very sorry for them and horrified at the turn it took. But it did seem odd that over time with “normal” treatments and physio, that Maya did recover in time. Which backs up the hospital’s decision not to dose her with ketamine.

It was very interesting and very sad. The huge doses of ketamine were something to be questioned- she hasn't had a relapse since being out of John Hopkins hospital, and off the huge amounts. Mum did come across, if you wanted to take it that way, and already had as quite insistent with the medication, despite being asked not to discuss it with her daughter...... but the whole family was let down and I really hope they actually get their chance in court to prove it. But she had a mum who was only ever trying to advocate for her, and instead every little thing she said was seen with a negative light and interpreted in a negative way because that was their bias. To discharge her with the syndrome they accused her mother of making up- I really hope there is some accountability somewhere

This was my thoughts too. Surely, his report would've proven that the mother did not have Munchausen by proxy? Why was the conversation he had with Sally Smith ignored and why wasn't that then pushed further by the family?
I couldn't help thinking that the people involved at the hospital enjoyed the drama of it all.

Just watched this. I think Beta truly believed the doctor and that using Ketamine was the only way for her daughter to not die a slow and painful death. Obviously doctors work differently in America as they are all private so he would be getting paid by them. I don’t know how much research has been done into Ketamine use for CRPS but I guess it wasn’t the first choice for treatment for the majority of hospitals/doctors.

I can understand the hospitals concerns about the Ketamine, but not sure how it got to the point that Beata was accused of having munchausen by proxy.

Then having someone like Sally Smith was the final straw for Beata.

I am quite surprised she’s made such progress though with physiotherapy alone. So I suppose the hospital was correct that she didn’t need the Ketamine.

Sad story.

I have to agree with this. The mum was obsessed with giving her ketamine. Something not right imo.

Yes, I think that bit was very telling.

Agreed. And the fact they were happy to take her to Mexico to be put in a Ketamine coma which could kill her. If it was my child I’d be getting the opinions of MANY doctors before even considering this. There’s a reason why it could be done in USA. Plus Maya had this treatment after only months of her presenting with symptoms, surely the Ketamine coma would be last resort.

Exactly. The dad wasn’t happy with how the mum was acting and pushing the ketamine treatment either.

I'm only half way through watching right now so will remain neutral until I’ve watched it all.

I think I missed a part when I watched it. I am sure I remember Maya had lots of treatment in the USA before they resorted to ketamine. I'm fairly certain I remember them saying they were at risk of bankruptcy because of the cost of all the treatments they tried in the US.

Really heartbreaking and tragic documentary. I can see both sides but at the end of the day you have a family, a child, at the centre of all of this. It just seems like a power battle between the system/ professionals. The mother, being a professional herself, knew what she was up against and didn't have any fight left within her. As parents we all make questionable decisions at times, that can leave enormous feelings of guilt, then you have a system putting all the blame on you- guilt and shame are the most toxic emotions and are never going to end well unless you have a support system.

Having been at the mercy of services for mental health in this country for the last 6 years for my DD, I can see exactly why the mum filmed and documented everything. You are pressed and pushed and your reality constantly tested.
She must have been so so desperate at the end and just couldn't see a way out. Her own husband was appearing like he was turning against her, even though that was the correct narrative; according to the legal team. Can you imagine?

The 'pushing' of the ketamine- imagine finally being listened to by a Dr who then seemed to offer a miracle cure- you wouldn't want to let that go for a second. You put your trust in the specialist and then make that commitment to see it through.

The Drs who knew her case most definitely could have fought harder for the family at the time but who knows what blocks were in place?

Poor girl is clearly traumatised. Horrible for all involved. Those poor kids

I just couldn't help noticing that when they filmed her looking very ill in the hospital bed after she'd been removed, she had her arms above her head - something she hadn't been able to do when she saw the doctor who prescribed the ketamine coma. She also learnt the piano and things - but maybe that's the nature of the disease, ups and downs, I don't know. I did read that it's often short lived I think it was and that people tend to grow out of it on the NHS website.

I thought the ketamine coma thing was too much, having to go to Mexico for it, it was all very dodgy but that could be desperation. Sally Smith was awful though. Poor Maya in the middle of all this. The doctor saying she would die if they didn't do what he said should be struck off (if that's a thing in the US) he was dodgy as hell, sending desperate kids off to Mexico to basically be experimented on.

I did read that it's often short lived I think it was and that people tend to grow out of it on the NHS website

I did have a look on the nhs website yesterday and couldn't see anything that said that. I think it's only ever short lived if it is picked up very quickly. But from our experience that pretty much never happens. As I said upthread, my dd has had it since she was about 14 and she is 26 now. It started off in one area after an injury and now, any time she hurts herself or most recently when she had a filling, she now gets the pain in the injection site. And she has to try and use all her tricks built up over the years to try and do this. Her tooth was especially bad at the start of this year and she didn't know what to do with herself. She takes Tramadol and that didn't touch it.

We have talked to our dd about the ketamine coma therapy and it isn't something she would want to do. We were looking at places in Germany I think, at least in Europe. We have looked into hyperbaric chambers, ganglion drips, so many things. Her main worry is if the treatments worked, what if it's short lived? She would then have to try and build up her tricks to deal with it all over again, and tbh, I don't think she could cope with that.

As is the case with some medical professionals, I get the slight feeling that people with CRPS are generally disbelieved, and I am feeling that a bit with some of the posts I have read. Maybe it's just people questioning what they have seen, but to have lived and cried with someone in so much pain, it is just awful. That said, had she never had it and I not done this with her, maybe I too would be questioning just how bad things were for them as I couldn't comprehend just how painful it is.

Just watched this. It was devastating.

I thought Susan smith was an utterly callous and nasty bitch. Im not devastated to hear she's retired after endless death threats and abuse sent her way. Her refusal to even entertain that she could be wrong in any case was horrific.
Her and the company she worked for settled their portion of the lawsuit at 2.5m dollars. I hope the company choked on it.

I hope the other woman involved gets the same treatment. A 10 year old in hospital with no one to advocate for her, stripped to underwear and pinned down for photos that she screamed she didn't want. And no one told her parents, nor asked consent.

I hope they take the hospital to the cleaners.

Just watched this, was so harrowing.
Feel so much for them all as a family. I really hope the hospital are held accountable. I know doctors are in a tricky position but this child had am obvious condition.
Feel like this will stay with me for a long time. Unbearably sad.

I also thought that it was interesting how the hospital's notes referred to Beata as "demanding" and she was talked about as "pushy", overbearing etc. Maybe if she'd been behaving more how our western culture expects/ demands women to behave (compliant, deferential to authority, weeping, acting weakly) she wouldn't have got into so much trouble. Definitely the cultural but also sexism issue here too.

Tbh, I think I’d be pushy and overbearing if my Dd was suffering and in pain so much and then taken away, I’d be banging the door down and demanding to see Drs. Normally I’m a calm, mild mannered person

Not just Sally Smith but that social worker Catherine who monitored Maya and her mum's calls sounded a dreadful person.

And I hope the Judge who denied a mother hugging her child realises he was part responsible for her death. Vile man