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Diagnosis as a childOur Stories

Lynda & Imogen

By December 3, 2021June 28th, 2022No Comments

Lynda’s daughter looked perfectly healthy when she was born. Six months later Lynda noticed she wasn’t using her hands.

“When Imogen was six months I noticed she wasn’t using her hands and would occasionally arch her back. The health visitor thought it may be caused by infantile spasm and advised us to get it investigated. Imogen had an MRI which showed some damage to the brain. We had no idea what could have caused such damage. We were sent home with the earth shattering news our daughter had a severe brain condition.

“After we saw the consultant we were pretty much left to it. It wasn’t until she was five when she was tested for CMV. After the genetic tests ruled out any genetic condition the neurologist said we will test for CMV. Her heel prick test showed she was CMV positive from birth, but sadly it was never picked up on. 

“Imogen is now severely disabled. She can’t walk, talk and is fully dependent on adults. She has cerebral palsy and requires a lot of care. To think a condition I’d never heard of has caused all this is heart wrenching. Even now, when I speak to midwives about CMV they usually ask ‘what’s that?’ – they have no idea how catastrophic it can be. 

“When Imogen was born I was able to take her to work with me. Work were very accommodating about Imogen being there. However, when Imogen started school part-time at three it became too hard to continue. She had many appointments during the week and it became impossible to care for Imogen and maintain a job, especially as a single parent.

“I get quite a lot of benefits with Imogen being so severely disabled. My extra tax credits help to fund a wheelchair adapted car. My other benefits, including £265 a month Carers Allowance, goes towards buying equipment Imogen needs that is either not available or it takes too long to secure on the NHS. Having a disabled child is expensive. I have brought bath chairs, spare wheelchairs, standing frames, walkers, a special needs tricycle to name just a few. 

“We have already gone through a number of wheelchairs. The last one we waited six months for and sadly by the time it has arrived Imogen has already outgrown it. 

“When Imogen has been through so many treatments, procedures and therapies in her short life. She’s had Botox injected into her calf muscles to try to relax them. She then went on to have two fairly extensive operations. 

“Imogen has cost both the NHS and Social Services a lot of money. Alongside her treatments and therapies, including consultant appointments and scans we also received funding for a through floor lift and wet room. 

“Having a disabled child requires a lot of support. Everything needs careful planning and even the simplest tasks take a long time. Showering Imogen with a mobile hoist takes over an hour, this is especially challenging because I have a two-year-old. I have explained to my younger daughter how Imogen has a poorly brain and sometimes does need more of my time.  

“After Imogen was diagnosed with CMV I discovered CMV Action. I attended the charity’s family party and was shocked at how many children were living with CMV. None of us had heard of the condition or had any idea when or how we got infected with it. The message of prevention must be given to pregnant women. I am shocked at how little professionals know about CMV and wish, at the same time you are advised to not touch cat litter or eat unpasteurized cheese, professionals would also advise you on the risks of CMV and some preventative measures to avoid catching it.”