It was during our stay at the Royal Children’s Hospital, that Alyssa’s right arm became virtually paralysed, eventually painful and we mentioned it to the neonatologists that were doing the rounds. One doctor (we assumed the head doctor on those rounds) gave her shoulder a bit of a squeeze, moved her arm a little and diagnosed Erb’s Palsy – nerve damage likely to have occured during a difficult birth and sent the physios to visit us and give us some exercises to do. We weren’t convinced, and mentioned so, that this was a correct diagnosis as it was far from a difficult birth and Alyssa’s arm hadn’t been this way since birth but we had noticed a gradual disintegration in movement during our time in Melbourne.
As it turned out, we ended up back in hospital only 4 days after returning home to Tasmania, with Alyssa’s arm being operated on to surgically remove infectious pus from around her arm and shoulder bones and joints – a very rare infection for a baby to have. The orthopaedic doctors who looked at Alyssa at the LGH were sure it wasn’t Erb’s Palsy on first investigation after doing a very thorough look at her range of movement and level of pain.
At a recent follow up appointment with the surgeon who operated on Alyssa he asked how we’d managed to leave Melbourne without this being checked and we mentioned the doctor had barely looked at her before giving a diagnosis and sending us home. We hadn’t been happy at the time but were just pleased to be going home so assumed they knew what they were doing. The surgeon asked if we’d informed the Melbourne doctors of the correct diagnosis and we said we hadn’t as we didn’t think he would have been terribly concerned given his attitude while we were there. The surgeon took it upon himself to write a letter to this Melb. doctor and explain the situation – so we were happy with that.
Along comes Tuesday and I receive a call from said doctor in Melbourne. He let me know he’d received a letter from the surgeon and wanted to assure me that he recognises he misdiagnosed Alyssa and recognises that the team of doctors perhaps hadn’t given Alyssa the time she had required to be adequately checked. He said that at the end of the rounds, seeing the babies who were getting ready to be sent home, after attending to 20 or more babies, some on ventilators and such, that they perhaps get a bit tired and more complacent and might have missed important factors.
They did do an xray at the time which didn’t show anything obvious but he did recognise that this should have prompted them more to do a better search for problems rather than end the search there.
He assured me that this matter has been taken seriously and the team have gotten together to discuss ways they can improve their rounds and hopefully avoiding mistaking an important diagnosis such as this one. The letter has been filed with a report on the incident and we’re welcome to make a formal complaint should we choose to. The doctor did a lot of talking, repeating many times over that he ‘recognises’ things went wrong – but couldn’t quite come at a simple sorry. I found it more amusing than offensive to be honest. I was just impressed that we got a personal phone call.
One interesting thing he did tell me was that in his 15 years at the RCH he had only ever dealt personally with two cases of this type of infection in babies which goes to show how rare it is. But interestingly enough, within a week of us leaving to come home to Tassie, a 12 day old baby presented at emergency with the same septic athritis that Alyssa had which is very surprising given its rarity. This bub had undergone xrays, ultrasounds and a CT scan to find the cause of the problem.
He had actually heard a lot sooner that Alyssa had been readmitted to hospital regarding her arm as one of the metabolic physicians told him in their staffroom one day. It obviously didn’t play much on his mind as it took this letter from our surgeon to contact us but he did mention that one of the junior doctors looked into it a bit more as she was surprised Alyssa would have picked up two very rare conditions as a newborn – being the infection and GSD. This didn’t surprise us as this junior doctor probably had the most to do with Alyssa while we were there, often popping in outside of rounds to see how she was doing.
So all in all, lots and lots of excuses and talking but not an actual sorry. The misdiagnosis isn’t really what bothered us as we recognise it was a tough call to make, being that it took the Launceston staff a while to figure it out too. It was actually the manner in which we had been treated which was the problem. He completely palmed us off at the time when we insisted we knew our daughter well enough to dispute his original diagnosis. It was his attitude as the head doctor which we were quite perturbed by – his apparent lack of care for our concerns.
I didn’t make much of it on the call to him – I was more amused by his eagerness to convince me that they ‘recognised’ the problem and had made efforts to correct the situation.
Yesterday we had another appointment with the orthopaedic surgeon at the LGH and mentioned the call so the doctor shared with us the letter that had been sent and we were no longer surprised we’d received a personal phone call. The surgeon definitely stuck it to him – informing him he’d messed up the diagnosis and filling him in on how serious the outcome was but that luckily it had been a fairly uneventful recovery – which was lucky for him. The highlight was the last paragraph which basically let the doctor know that although we, the parents, were concerned about this situation, we were quite reasonable people and unlikely to pursue this mistake further but that it might be a good idea to discuss the issues with us just to be sure 😀 It was a brilliant piece of diplomacy if ever I’ve seen it and I’m glad we let him take charge because there’s no way we would have said it any better.
I am sure it was due to the extra vigilance we gave Alyssa due to the GSD that we noticed things progressing badly with her arm, and our instincts as her parents that helped our situation end well but it certainly could have been a lot worse. The main thing however is that changes have been put in place at the hospital to ensure the babies that are ‘last on the list’ during rounds are given as much attention as the babies at the start of the rounds. So hopefully this will continue and it will ensure another baby, who may not be as lucky as Alyssa was, is adequately looked after.
The great news is that in the last week the range of movement in Alyssa’s right arm has increased dramatically and she is more regularly moving her arm from the shoulder and we’ve noticed her playing with her ear and sucking her hand which she hadn’t been able to do before now so all good signs she has recovered well from her surgery. The orthopaedic doctor checked out all of her muscles in and around her arm and aside from a small deltoid muscle around her shoulder (in comparison to her left arm) her muscles appear to have healed well and he expects a full recovery. Her scar will gradually fade but probably never go away and he said cosmetic surgery can always fix that for her in future, but we hope Alyssa will view it as her very own battle scar and be proud of what she went through to need the scar there in the first place. We hope it will be a continual reminder her of her tremendous bravery and strength in the beginning of her long, happy life.