"Can I forgive myself for my daughter's death?" Shocking, heartbreaking.

[shrike3]

https://www.theguardian.com/society/2023/aug/27/can-i-forgive-myself-for-my-daughters-death

It’s been two years since my daughter, Martha, died in hospital, just before her 14th birthday. I divide my life into before her death, and after: nothing is the same and the change is permanent. Alongside Merope, Martha’s mum, I’m grappling with how to live. Consciously or not, we adjust a little more each day to our new reality, wondering: can we manage to appear “normal”? Is it possible to keep being friends with families and not be flayed by envy?

If grief can be defined as learning to be in the world without a person you love, I have a lot of learning still to do. As things stand, my thoughts revolve around two questions – they dominate my days. The first is: can I forgive the doctors and the hospital who so badly let her down? (Martha’s was a preventable death.) And second, at the core of everything: can I forgive myself for failing to save her?

When you raise a child for 14 years, the line where you end and they begin gets blurred; the cliché is that they become part of you, with all your instincts and priorities transformed. From the time Martha was born in 2007, I saw myself, first and foremost, as a dad; from 2009, I was the father of two daughters and it gave me a huge sense of self-worth and fulfilment. I did what parents do everywhere – the bathtimes, the picture books on repeat, the school run. It felt right; it was a lot of fun.

snip

My primal, existential role was to protect my child, to keep her alive – and I failed. Most bereaved parents know a version of this feeling. It’s one of the reasons losing a child can be different from other types of grief. Not only is such a death an inversion of the natural order. And not only was Martha denied anything that resembled a full life (“She had so many plans,” her sister, Lottie, said.) But I was responsible for her welfare during all of her short life. So when I went to see Martha’s body, post-autopsy, at the undertakers, what I howled was: “I’m sorry, I’m so sorry.”

Written by the child's mother a year earlier:

https://www.theguardian.com/lifeandstyle/2022/sep/03/13-year-old-daughter-dead-in-five-weeks-hospital-mistakes

[malaise]

2. Heartbreaking

[yardwork]

3. Sepsis that was overlooked over a weekend. Classic example of systems failure.

The nurses were aware but the institution's culture prevented them from escalating, and the physicians in charge weren't on top of it, partly because it was a weekend.

This is not the parents' fault. It's the fault of the institution. Lower level employees are typically blamed in these situations, but they weren't the main cause, either. The leadership needs to do a complete overhaul of the institution's policies and culture.

[Make7]

4. That's painful to even read. I can't imagine living through it.

Unfortunately, I fear the parents struggle with blaming themselves won't ever end. This was not their fault - getting your child to a hospital that specializes in their exact injury and trusting medical professionals with decades of training and experience is what any responsible parent should do.

Their ability to share their experience so publicly is remarkable - I'd be curled up in a ball crying for years.

[peggysue2]

5. This kind of writing can be cathartic for the writer

It will never remove the loss and terrible grief. But with a published piece, you get a reaction from readers--comforting responses, words of good wishes and strength, even advice from those who have gone through the same thing. The very acknowledgment of loss and grief is therapeutic.

Keeping it all in can kill you.

Even though the responses are from people you don't know and probably never will know, the words themselves provide solace.

It's like thousands of hugs flying in from the Universe.

[Sympthsical]

6. Reading that is crazy

Tachycardia and low blood pressure when they knew she had sepsis.

But nah. Why bother the ICU?

W.T.F.

[Sky Jewels]

7. Absolutely terrifying.

It makes me think about how freak things like this can happen to anyone at any time. Not a happy thought. Especially when it comes to our children.

[Wingus Dingus]

8. America's health care has obvious issues--mostly, it's unaffordable.

But having read the mother's article, we don't have the same medical culture and rigid rank system here as they seem to have in the UK that led to and compounded these errors--that's a good thing. Plus, we probably overdo testing, because of litigation. She wouldn't have been written off as having "internal bruising", for example, at the first ER visit. She would have probably been offered an abdominal CT just based on the severity of pain and difficulty catching her breath. And it goes on from there. Nurses in the US have perhaps more respect as professionals--and many doctors will wisely take into consideration their experience and their observations, and take their concerns seriously. Having been a critical care nurse myself, the turn of events at that British hospital is just crazy continuous malpractice.

What a shame, this poor girl's death and her family's ordeal. Very sad.

[Ms. Toad]

10. I can assure you, from the situations our family has encountered,

that very similar things happen here.

We (patients/parents) are likely less likely to know about them because the risk of litigation makes what happened less transparent.

[shrike3]

13. I'm afraid you're right.

We've learned the hard way. Ask questions. Get a second, or third, opinion. Sadly, don't assume your medical team always has your best interests at heart.

[Ms. Toad]

14. I don't think they are ill intentioned -

but doctors have egos - particularly the less experienced ones, and some of the old school ones.

And, they live in the 95% world. What they do works for 95% of their patients. Unfortunately, as I have to keep reminding them by giving them a litany of all of the uncommon or rare conditions in my life, I live in the 5% world. Hoofbeats, in my experience, nearly always mean at least a zebra is on its way - and more often than not - a unicorn.

So I not only have to get second and third opinions, I have to become an expert in anything my symptoms might mean - and in any condition I have. If I can't predict everything they are going to say to me at an appointment one of two things is going on (1) I haven't done enough research or (2) I have encountered the rarest of rare - a doctor who is farther ahead on my condition than I am. Fortunately, I've encountered a few of those gems - and when I do it is almost worth following them when they decide to move to Timbuctoo simply to remain their patient.

[shrike3]

15. I agree they are not ill-intentioned.

Last edited Tue Aug 29, 2023, 09:57 AM - Edit history (1)

But there are some who would rather be right, no matter what it costs. And, sadly enough, there are times when it's about the money.

[Ms. Toad]

9. The first doctors I challenged were "baby" doctors (aka doctors in training).

I was scolded by my PCP for challenging them, but it may well have saved my life. They were in charge of monitoring my heparin, back in the day before sub-Q heparin when you had to be hospitalized for a couple of weeks following a blood clot so they could administer it via an IV pump.

I was dangerously hypo-coagulated (too much heparin - and at risk of having an uncontrollable bleed), so they had to repeatedly stop and start the heparin. They were worried about how many sticks they had to do on me (I stopped counting at 100), so instead of testing before they started the heparin again they would start it back up based on half-life calculations and test only after it had been back on for an hour. Repeatedly. Because I was still dangerously hypo-coagulated at an hour they would repeat the process. I was pretty sure, by the second time, that I never dropped out of being dangerously hypo-coagulated. So I politely explained what I believed was going on. They gave me the half-life explanation. I asked them to test before starting the IV again. They refused. So I refused treatment until they tested. It took several hours before I tested in the safe level again.

Ironically, it was the same condition - then rare - in which the more experienced doctors on my team trained me to research and advocate for myself. They had no clue, and nearly performed surgery that (we now know) would have been disastrous. After we decided against surgery, they brought me every article then available (perhaps a half dozen), explained what they knew - and what was unknown, and asked if I had any thoughts (this was after the heparin incident . . . so they knew I was no dummy). I proposed a non-medical treatment plan - triggered by an off-hand comment they made. They agreed (even though it was against hospital protocol, and somewhat risky). It worked. I am one of few people from that era who have full use of the impacted arm.

Since then (mid 80s), I have saved my uterus, self-diagnosed my daughter's rare medical condition (confirmed by her doctor who refused to test her for it until I insisted), and self-diagnosed the presence of my own cancer (which turned out to be a rare, aggressive, cancer which is not normally diagnosed until it is too far advanced to treat), among other things.

I have been pushing people to advocate for themselves, sometimes to the point of making them angry with me because they have 100% confidence in their doctors. No doctor - even the best (and I have been treated by several of the very best) deserves 100%, blind trust. I've been doing this long enough to have several individuals come back and tell me they wished that they had listened to me. I always feel guilty, even though I know I did everything I could have at the time.

[lostnfound]

12. What you said. So true. Nt

[liberal_mama]

11. This isn't surprising. Doctors and nurses made mistakes that kill people all the time. People

need to stop glorifying doctors. When my dad was in the hospital, they killed him with their incompetence. Out of dozens of doctors we dealt with over a month, there was only one that seemed to know what they were doing and that was on the last day of his life.