My fellow GPs need to take action now.
GP Christine Wheatley, wants GPs to take action now to help reduce the numbers of babies born with devastating conditions by giving some simple routine advice to pregnant women. Driven by own personal experience, Christine wants her colleagues to know how one simple recommendation could save the NHS millions every year.
“I vaguely remember CMV being covered as part of my paediatric training, and how, if transmitted during pregnancy, it could cause stillbirth, miscarriage and lifelong impairments. I had no cause to ever think about it again, until years later when my second child was born. After my daughter’s birth I took in the low birth weight, tiny head and the knowledge she had failed her hearing test – and had a flashback – this sounds like CMV.
“While it is common for us GPs to advise pregnant women to avoid cat litter or eat blue cheese, how many of us advise our patients on routine hygiene measures they can take to limit the transmission of CMV? Despite being more common than toxoplasmosis and listeriosis, and the mounting evidence on the benefits of issuing preventative advice, women are still not being warned.
“After Ellie’s birth we were referred to a paediatrician to investigate the cause of deafness. I pushed for Ellie to be tested for CMV. The blood test came back negative. I insisted a further urine PCR was taken. The PCR came back positive. This result enabled Ellie to be treated with antiviral medicine within the recommended six-week window. If treated within this time frame, studies have shown it helps to reduce the impact of SNHL hearing loss.
“Ellie was failing to thrive. We were given a poor prognosis and told Ellie was blind, likely to have cerebral palsy and would never speak. We were devastated. I refused to believe it was true and took each day as it came, always looking for positives.
“Ellie was tube fed from six weeks, had hearing aids at nine weeks and six general anaesthetics in her first year alone. Ellie had her first cochlear implant at 14 months and second at 23 months. She did amazingly well with the implants and defied all expectations. She started to talk – it was wonderful. We believed we were home and dry. Ellie’s deafness and speech were improving. Sadly, as Ellie got older, we realised deafness and speech were not the only consequences of CMV. Ellie has autism, learning difficulties and struggles with eating and sleeping.
“Every day we live with the consequences of CMV. The constant, unending battles to get Ellie the right care and support. The many meetings and hospital appointments, making it impossible to work full time as a GP. My two other daughters have become young carers. The emotional toll on the whole family is huge. The consequences of CMV extend well into our family budget. I must have driven thousands of miles to take Ellie to appointments – whether that be at Great Ormond St or to Oxford. The transport and hospital parking costs alone soon mount up.
“Ellie requires a great deal of support from the NHS. She sees speech and language therapists, physiotherapists, occupational therapists, dieticians, paediatricians, ophthalmologists and balance specialists. This support is likely to continue for the rest of her life.
“I really want to get the message out to GPs that ultimately the best way to reduce the future cost burden of cCMV is by fewer babies being born with the infection. This is why it is vital we as GPs, alongside midwives, advise pregnant women of the simple hygiene measures to reduce the risk of infection. Lower rates of cCMV infection have been reported in countries where risk reduction advice is routinely given. Despite this, information about preventing a CMV infection is not routinely provided by GPs.
“As GPs we need to do our bit to reduce the transmission of this devastating infection. Simply when we advise our patients not to touch cat litter, eat blue cheese, we should also advise them not to kiss young children on the lips, share cutlery, and wash their hands after changing nappies. Making women aware of the risks helps them take action to reduce their risk of getting infected with CMV. It is such a simple solution, but sometimes the most effective solutions are the simplest ones.”