Would Abi have avoided some complications if she had undergone surgery sooner? As I will never know the answer, dwelling on that is pointless. However, I was determined that another family should be spared having to endure a similar drama. So not long Abi arrived home from hospital, I wrote a hard-hitting letter to the manager of the local surgery:
The fact that my 2-year-old daughter is alive today is in no way thanks to your practice, who missed many opportunities to spare her some pain. It is due to the concerns of an Optician at the eye hospital, who was, correctly, worried by my daughter’s symptoms. She quickly got Abi seen by a Paediatrician, who noted fluid behind Abi’s retina, indicating raised intracranial pressure. The Paediatrician immediately admitted Abi for overnight observation in the children’s hospital. She had an MRI scan the next day. Unfortunately, that revealed that Abi was suffering from a tennis ball sized brain tumour on her Cerebellum. This was preventing Cerebrospinal fluid (CSF) draining properly, causing a build up of pressure and putting Abi’s life in danger.
Abi was rushed to a hospital specialising in the surgical care of children with brain tumours. She was, by then, gravely ill, and “arrived at death’s door,” (her surgeon’s words). She was taken straight down to surgery to have the fluid drained (putting her out of immediate danger), and then she had to undergo a twelve-hour operation. Thankfully, the operation was a success. The tumour is a Grade 1 Pilocytic Astrocytoma, which has an extremely good prognosis. But Abi now has hydrocephalus, so she has a shunt fitted to help her drain CSF. Fortunately, that is working extremely well so far, and she looks tremendously healthy. I’ll learn what else lies in store for Abi over the coming months (she may need another operation to remove any remnants of tumour). However, I am extremely pleased to have a healthy child back among the family fold, given what she’s been through.
Even in the midst of the darkest hours of Abi’s illness, there was a shining light - the care she received once she was correctly diagnosed was inspirational. I am in awe of the love the hospital staff put into their work. It was a joy to behold and, through our despair, it has helped to sustain the family. However, this is in direct contrast to my emotions regarding your practice. Abi was brought to you many times in the weeks leading up to her being rushed to the hospital. Amongst her symptoms were a squint, her losing the ability to walk, vomiting and headaches. She even vomited right in front of one of your doctors. I have learnt that they should have raised alarm bells because they are classic symptoms of a neurological disorder. Abi was gravely ill, yet your doctors failed to register the severity of those symptoms. One time, Abi was even offered Tamiflu, and that was without any flu symptoms, apart from a headache.
I cannot imagine the pain Abi had to cope with in the weeks leading up to her being rushed to the hospital, critically ill. Doctors there have since told me that Abi arrived just in time and that she would have probably “fallen asleep that night and not woken up”. The thought of her not dying next to her elder sister, whom she sleeps next to, is almost too much for me to bare. I am so thankful I have not had to cope with that. Had I lost my daughter, this letter would have been laced with words like ‘incompetence’, ‘insensitivity’ and ‘negligence’. They would have been justified. Thankfully we have not suffered a fatal outcome. But I feel I need to write to prevent another family having to endure our stress.
Given my experience, I will not entrust to your practice my family’s ongoing health. In fact, I feel I would be failing them if I did. On top of everything, each time we visited your doctors, they ignored our worries that Abi was gravely ill. Sometimes a mother’s intuition is worth noting!
I have been told by extremely experienced medical staff that children of Abi’s age DO NOT suddenly develop squints, stop walking, vomit and have headaches without something very seriously amiss. In fact, I have also been told that if a child of a year or more suddenly develops a squint, then this could be symptomatic of something serious. My opinion now is that it’s much better erring on the side of caution and that children need scanning if there’s any doubt at all. Else we’re failing them. Abi is a case in point. Please, in the future, if you ever see a child exhibit a combination of those symptoms, then get them scanned. You may save a life.
I accept that you have a difficult task because you see many patients with a variety of illnesses. But that doesn’t excuse failure. Thankfully, most people you see will have trivial complaints that time will heal. But mother time can also play the villain in some cases. My daughter was such a case. It’s exactly then that a family needs you to do your job competently. Unfortunately, that wasn’t to be for Abi and ultimately, you failed her. You were given many opportunities to spare her some pain, but it took someone outside of your practice to pick up on the seriousness of Abi’s condition and get her correctly diagnosed. If I’d have left it to you, we’d have lost her.
However, my hope is that, as a practice, you will learn from Abi’s case and take steps to make sure that other families do not have to endure as much anguish as mine.
Reading that letter now, I can recall my anger. It’s a proper-good-old-fashioned rant. It got results, though; I also forwarded it to my local Member of Parliament and the local government’s Primary Care Trust, who held an inquiry into Abi’s case. Following a review, doctors at that practice received training for recognition of some unusual neurological signs and symptoms. As did the Optometrist who thought Abi was long-sighted, and who probably lied when she told me that: “I see children with those symptoms all the time.” I believe that all doctors should undergo such training. Because, unfortunately, children with brain tumours are often unwell for months before treatment. Yet time can often be critical, and any delay between symptom onset and diagnosis can increase the likelihood of morbidity. Quite simply, brain tumour awareness among the UK’s front-line doctors could save lives.