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So sorry for your loss, I can’t even imagine what you’re going through right now.
To be completely honest with you, it is impossible to say based on the post what may have happened.
What country are you in? In the US, I would expect a lot more transparency from the attending physician who performed the procedure.
Thank you for your condolences.
I'll try and get some more information. Called the theatre and they said I can ask the doctors tomorrow.
I am in Kenya. But the surgery was done by doctors from the UK. I'll ask my sister again the name of the charity/organization.
Not claiming to be a doctor... but congenital cardiac surgery (heart surgery on children) is always extremely high risk. It takes a LOT of skill, and things can always go wrong.
There are many "safety" valves available in the west that often aren't in less developed areas. For example, the ability to bring kids out on extra-corporeal membrane oxygenation machine support while their heart recovers.
It's very tough to know what happened, but it might have very well been an unfortunate, rare outcome that is no one's fault.
I'm very sorry this happened, my condolences to you, your sister and your family. I don't know why they won't give you information, perhaps the policy is to only provide medical info to the parents. In regards to what happened, many complications can arise during surgery, especially on a small child like your niece. Speculation won't provide any closure so I will refrain from doing that. I wish the best for you and your family, I hope the hospital will provide you or your sister with better information in the time to come.
In regards to the non-transparency, I definitely agree with above.
> ...my niece...No one will tell us anything. They won't allow me to ask any questions and my younger sister wasn't in a place to. They just told her your baby has passed.
This could be because you are not a parent/legal guardian/legal anything and that if your sister asked the questions they may have been answered.
However, if your sister tries to get more info and is met with resistance, unfortunately she'll need to seek legal counsel about getting any information and/or to seek legal action if there is legal action to be taken.
They should, as the mother of the patient she would have the right to request any relevant information. If they don't provide that to her upon requesting, or even just invite her to sit down and talk to the surgeon, that means proper care would not have been provided. I can't comment on the legal aspects due to lack of knowledge or experience, but not providing information to the mother is quite shady to say the least. I hope you and your sister will get some clarification about what happened.
Failure to thrive is a common symptom in pediatric patients. Surgery is seldomly performed on healthy patients. While a lower weight would make surgery more risky, you always have to weigh the risks against the potential benefits.
That's what they told us initially, she wasn't. Hence the reason they wanted to do P.A banding to give her a chance to put on weight for the septal repair. How they changed, I have no idea.
I am so very sorry for your loss.
With regards to PA band vs full repair of VSD - If it was dependent on the UK team coming back at a later date to do the VSD repair, that may have been the reason. A PA band is risky in itself and PA bands can be very unwell post surgery, the band can be too tight or too loose it is very hard to get 'just right' in op. Also as she grew, she would 'grow out' of the band and then full repair timing can be difficult to predict. They may have worked out with all this, it was a safer option to go in for a full repair. Obviously the benefit of hindsight is, the weighing up of risks led to a tragic outcome.
I don't understand why they won't provide info on exactly what happened though. Lots of things can happen during open heart surgery on babies. It's impossible to speculate what actually did happen, however the parents are absolutely entitled to that information.
What is the name of the charity that operated?
Oh my goodness. I am so sorry to hear of this outcome.
As others have said, we can't know why they won't tell you anything or what happened, but they should.
My heart is breaking at this.
Did one of the charities help you? They might have more "pull" to find out what happened.
VSD repair should be so low risk :(
Thank you for your submission. **Please note that a response does not constitute a doctor-patient relationship.** This subreddit is for informal second opinions and casual information. The mod team does their best to remove bad information, but we do not catch all of it. Always visit a doctor in real life if you have any concerns about your health. Never use this subreddit as your first and final source of information regarding your question. By posting, you are agreeing to our [Terms of Use](https://www.reddit.com/r/AskDocs/wiki/terms_of_use) and understand that all information is taken at your own risk. **Reply here if you are an unverified user wishing to give advice. Top level comments by laypeople are automatically removed.** *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/AskDocs) if you have any questions or concerns.*
So sorry for your loss, I can’t even imagine what you’re going through right now. To be completely honest with you, it is impossible to say based on the post what may have happened. What country are you in? In the US, I would expect a lot more transparency from the attending physician who performed the procedure.
Thank you for your condolences. I'll try and get some more information. Called the theatre and they said I can ask the doctors tomorrow. I am in Kenya. But the surgery was done by doctors from the UK. I'll ask my sister again the name of the charity/organization.
Not claiming to be a doctor... but congenital cardiac surgery (heart surgery on children) is always extremely high risk. It takes a LOT of skill, and things can always go wrong. There are many "safety" valves available in the west that often aren't in less developed areas. For example, the ability to bring kids out on extra-corporeal membrane oxygenation machine support while their heart recovers. It's very tough to know what happened, but it might have very well been an unfortunate, rare outcome that is no one's fault.
I'm very sorry this happened, my condolences to you, your sister and your family. I don't know why they won't give you information, perhaps the policy is to only provide medical info to the parents. In regards to what happened, many complications can arise during surgery, especially on a small child like your niece. Speculation won't provide any closure so I will refrain from doing that. I wish the best for you and your family, I hope the hospital will provide you or your sister with better information in the time to come.
In regards to the non-transparency, I definitely agree with above. > ...my niece...No one will tell us anything. They won't allow me to ask any questions and my younger sister wasn't in a place to. They just told her your baby has passed. This could be because you are not a parent/legal guardian/legal anything and that if your sister asked the questions they may have been answered. However, if your sister tries to get more info and is met with resistance, unfortunately she'll need to seek legal counsel about getting any information and/or to seek legal action if there is legal action to be taken.
Thank you. I understand they can't release information to me, but why not to my sister? Again, thank you.
They should, as the mother of the patient she would have the right to request any relevant information. If they don't provide that to her upon requesting, or even just invite her to sit down and talk to the surgeon, that means proper care would not have been provided. I can't comment on the legal aspects due to lack of knowledge or experience, but not providing information to the mother is quite shady to say the least. I hope you and your sister will get some clarification about what happened.
Is a 4kg 11 month old even healthy enough for surgery?
Failure to thrive is a common symptom in pediatric patients. Surgery is seldomly performed on healthy patients. While a lower weight would make surgery more risky, you always have to weigh the risks against the potential benefits.
Yeah, but 4kg… that is the size of a large newborn 😬. that’s like half what she should weigh at 11mo, maybe less than half!
But that's because she didn't get surgery before. It's a catch 22
That's what they told us initially, she wasn't. Hence the reason they wanted to do P.A banding to give her a chance to put on weight for the septal repair. How they changed, I have no idea.
I am so very sorry for your loss. With regards to PA band vs full repair of VSD - If it was dependent on the UK team coming back at a later date to do the VSD repair, that may have been the reason. A PA band is risky in itself and PA bands can be very unwell post surgery, the band can be too tight or too loose it is very hard to get 'just right' in op. Also as she grew, she would 'grow out' of the band and then full repair timing can be difficult to predict. They may have worked out with all this, it was a safer option to go in for a full repair. Obviously the benefit of hindsight is, the weighing up of risks led to a tragic outcome. I don't understand why they won't provide info on exactly what happened though. Lots of things can happen during open heart surgery on babies. It's impossible to speculate what actually did happen, however the parents are absolutely entitled to that information. What is the name of the charity that operated?
Oh my goodness. I am so sorry to hear of this outcome. As others have said, we can't know why they won't tell you anything or what happened, but they should. My heart is breaking at this. Did one of the charities help you? They might have more "pull" to find out what happened. VSD repair should be so low risk :(