Hospital Negligence?

[Gill15]

Hello! I feel a bit funny asking about this but I'm feeling a bit confused and wanted to see if anyone else had any similar experiences! My daughter Niamh was born almost a year ago and has SB at L3 and hydro. She had her back closure at 1 day old and then her shunt fitted at just over a week old. Some of you may remember that just after her shunt op I posted on here looking for advice as she wasn't doing well at all. You all said (thankfully!) it sounded like shunt failure and/or infection. Despite us asking the doctors to check this it took them 7 hours before anyone did. At this point she was diagnosed with an e-coli infection caused from leakage from her nappy in through her back wound. We had 2 weeks where Niamh was in intensive care and it was touch and go. Anyway, to cut a long story short, Niamh is doing great now, which is fantastic, but a couple of things have been highlighted that are concerning us. We have been told that until Niamh is fully developed and grown we will not know if the infection has caused lasting damage. More worryingly, the hospital has learnt nothing from what happened to Niamh and are continuing to put babies at risk by not having proper procedures in place for covering back wounds etc. It has been recommended to us that the only way to address this is for us to make a complaint against the hospital for negligence. I'm reluctant as they may have caused problems for Niamh but they also made her better and they continue to care for her now.

Has anyone experienced anything similar and willing to offer any advice?

Many thanks
Gill

[Kari]

Wound infection after closure surgery is a very common problem. Zach had pseudomonas meningitis and was in the hospital for 6 weeks. It traveled from his wound on his back into his shunt. Because he was so little, we will never know which deficits are from infection and which are from SB. The way I see it, there is no way to prove anything either way.

I assume that you don't believe her wound was covered well. Do you have a way to cover it better? Zach's went down to his butt crack (sorry, but it's the easiest way to describe it), so the dressings had to be changed every single time he pooped.

Anyway, I guess I really don't have any advice. I would like to hear if you have a way to cover the wound, but allow for cleanings, ventilation, etc.

[Gill15]

Thanks Kari, this is helpful. I totally appreciate wound infection is so easy to happen which is part of the reason I am reluctant to take it any further. Niamh's wound went right down into her bum too so was a nightmare to keep clean and there was always a high risk of infection. After she got home I did find a website that showed a really good way of packing and sealing round the babies bum (basically with gauze and surgical tape packed and sealed inside the nappy). I've shared this with other families with newborn SB babies and it has made a big difference.

I do think there were things that should have been done differently, for example when Niamh was born my husband was asked how he thought they should cover the wound to transport her to the sick kids hospital. Then a day after her surgery the neurosurgeon removed the plastic surgeons dressing without consulting them and left the would un-covered. It wasn't until the plastics doctor came back that we realised this shouldn't have been done (Niamh's wound hadn't closed properly at this point so leaving it uncovered was increasing the risk of infection). With hindsight all these things could have caused a problem, but equally she could always have caught an infection. When she got moved to intensive care they took much more notice of her dressings and it came to light that no care plan had been put in place for her back wound so stitches that should have been removed were left etc.

I just don't know how to get the docs to understand that all these small things can add up to a very serious situation for a baby.

Appreciate your comments and feedback, is always useful to hear other people's experiences! Thanks

[Mustang Sal]

Hi Gill,

I think if you have concerns over the hospital's practices and procedures you should voice them, because if no-one ever points out things they're doing wrong, or things that definitely have room for improvement, they'll never know and therefore nothing ever changes. You don't have to go in all guns blazing, shouting about negligence - you could raise a formal complaint detailing all the things you've mentioned here. The hospital have to take *all* formal complaints seriously, and will be obliged to investigate each area of concern. Make it clear that you want health care professionals to really look at how they do things, and listen to patients and families' concerns, and that this will be for the good of all newborn babies with SB. Of course mention the infection that Niamh developed, but as you say, I don't think you can necessarily say for sure that this happened because of something they did. You have a right to question how your child was treated, and I believe they do need to explain why they followed the course of action they did.

Do you have PALS (patient advice and liaison service) at your hospital? If so, you could start with them first. If they can't help you, then I think it would be appropriate to go forward with a complaint. Whatever happens though, Niamh's care should not be affected in the slightest by this.

I know what you mean about not wanting to complain to a hospital that's still looking after your child. I've been in situations where I was considering what to do - I didn't want them look at me as a troublemaker or whinger, and was worried that it would affect my care and ongoing treatment. In the end though, I did contact PALS (on two separate occasions actually) and I did get things moving.

Hope this helps :)