You do not need to know what is wrong, you only need to know that something is wrong.
This is something Roisin knew all too soon as a first time mum to her beautiful daughter, Aila. Born at a similar time to others, Roisin had red flags when Aila didn’t rebound from a common cold like her friend’s babies did. But then other symptoms began to emerge – these are what we call a ‘cluster’ and one of the red flags for childhood cancer. However Roisin had a less than ideal journey to diagnosis with Aila.
“Are you a first time mum? “
This seemed to be the leading question during consulations. Despite Aila’s ongoing symptoms of weight loss, difficult breathing, fatigue (more than expected for a newborn), the cluster of symptoms was clearly developing but all could be individually explained. She was breastfeeding , newborns are always sleepy hence one clinician remarked she was ‘lucky’ to have such a sleepy newborn.
“She was tiny, unable to gain any weight and falling into the lowest weight centile despite being born at a perfect weight. She struggled to breathe, her breathing sounded like she was snorting and wheezing, bruised lumps appeared on her head, her eyes started to bulge, she was incredibly upset and hard to settle. I was watching my baby get sicker and nobody could tell me why.”
Over a period of 4 months, repeated admissions, 111 calls, health visitor appointments and GP assessments Aila’s symptoms persisted and sadly they became worse.
Only when someone stepped back and looked at all of the symptoms together did the picture change.
That is an important lesson for clinicians and parents alike. Parents – you are the person to best know your child’s overall picture, you are with them all the time, you notice everything. “Parental Concern” remains a significant piece of the diagnosis journey of any illness. It appears however more work is needed in this vital coalition in prompt diagnoses.
Finally a clinician was able to see the cluster of symptoms and ordered every test to find the answer.
Aila was quickly diagnosed with AML (Acute Myeloid Leukaemia).
However the delay in reaching the correct diagnosis meant she had rapidly deteriorated and she was admitted to intensive care before her cancer treatment could even begin. The delay in the correct diagnosis also has far reaching implications, as the severity of disease on diagnosis impacts prognosis and relapse risk, something Roisin struggles to to come to terms with now, bearing the guilt as any mother might do : “Could I have done more?’
Aila began an intense and difficult treatment journey over the next 6 months, there is no ‘child’ cancer treatment, it’s the same chemotherapy whether you are an adult or a child. It wreaked havoc on her body , there was sepsis, anaphylaxis, emergency surgery, missed symptoms of complications.
Learning to ask different questions….
We asked Roisin : What advice would you give to new/any parent having been on this traumatic diagnosis pathway?
“Challenge dismissals, ask questions and request that everything be documented.”
A parent asking those questions may just allow the clinician to question their own consultation. If a blood test isn’t being done, ask why. Ask how they expect symptoms to resolve and in what time frame, ask what the plan will be for review.
This ensures parents walk away from consultations feeling more conclusive than ‘wait and see’.
We are happy to share that Aila finished her treatment and has remained in remission since her diagnosis 4 years ago. The events surrounding her cancer journey still trouble her mum greatly. It’s important that families are permitted a space to speak about the things they went through and what they endured as often as needed, in safe spaces where they can be encouraged to share.
One thing about Roisin’s story really stayed with me. She knew something wasn’t right, even though she didn’t know what was wrong. She was persistent with presenting to the different agencies with her concerns, a less confident mum may not have been so persistent and suffered a much more difficult outcome.
Remember : It’s ok to keep asking questions if you don’t feel things are right. You’re not being difficult, you’re advocating. There’s a difference and more often than not and quite sadly – mum’s are always right.
