Written by her grandmother Jan – now a Trustee of CMV Action.
16th July 2012. That day changed our lives.
James (my son) and Lucy were expecting their first child, a girl. It was an easy pregnancy and Lucy was booked in to the local birthing centre. The delivery went well but as soon as Lyra was born it was evident she was a very sick baby. She was immediately transferred to hospital and James and Lucy were told that their darling daughter was not likely to survive.
This was Lyra. Her little body was covered in red blood spots, her liver and spleen were huge, her platelet count was very low and she needed transfusions. Her head was very small and she was a low birth weight for full term. The doctors did not know what was wrong but soon came back with a diagnosis of a CMV infection. They admitted they knew nothing of CMV and were liaising with doctors at Kings and St George’s in London. Antiviral drugs were started by the end of day one. These drugs are toxic and weaken the immune system, attacking the white blood cells that fight infection and can cause further damage to the kidney and liver. It was not a simple solution but there was no choice.
James and Lucy, family and friends, had never heard of cytomegalovirus. Most of the health professionals had not heard of it.
During her first week, Lyra was transferred to Kings Hospital where they have a specialist liver unit. Scans showed chronic liver damage and a spleen the same size as an adult. They continued to advise the doctors when she returned to hospital in Tunbridge Wells. Many tests followed. Ultrasound showed calcifications on her brain. Lyra failed her newborn hearing screening.
At 3 weeks old Lyra had an MRI scan. We found out that the damage was massive. Lyra had microcephaly and polymicrogyria – her brain had stopped developing in the early weeks in the womb.
Lucy had contracted the virus and passed it on to the baby in the first 8 weeks of pregnancy – the virus was detected in Lucy’s booking in bloods but nobody had looked for it at the time. James and Lucy were told that Lyra’s brain damage was so severe she would never walk or talk and would probably never even know they were her mum and dad. They were devastated.
Lyra was very poorly but she was never on a life support machine. She had many transfusions, drugs and oxygen but she always breathed for herself.
In the coming weeks, we had to come to terms with the knowledge that Lyra was severely mentally and physically disabled and medically fragile.
Lyra came home after 8 weeks in 3 different hospitals.
Over the next months, it was confirmed she was blind. At 8 months she started having seizures. Her epilepsy is complex and difficult to control.
Her first birthday was a strange day of mixed emotions – a celebration but mixed with sadness.
The year had been an emotional roller coaster – the agony of seeing Lyra struggle and in pain, the grief and mourning for the baby they thought they would have, the anger that nothing was detected in any blood test or scan, the frustration that no one knew anything about CMV.
Lyra has appointments with just about every consultant – infectious disease specialist, paediatrician, neurologist, hepatologist, gastro-enterologist, orthoptics, opthalmologist, audiologist, respiratory. Not to mention the physiotherapist, occupational therapist, epilepsy nurse, key worker, teacher for the visually impaired, speech and language therapist, feeding consultant, nutritionist, dietitian – and more that I can’t remember ….. all these people in London, Brighton and Eastbourne – never a dull moment!
So today, how is life for Lyra? CMV has affected her whole body. She has severe cerebral palsy. She can’t roll, sit or even hold her head up. She has chronic liver disease and damage to her lungs, kidneys and spleen. She has severe and complex epilepsy, scoliosis of the spine and dislocated hips. She is medically fragile and can’t fight infection. She is PEG fed. She can’t see. But she can hear, maybe thanks to the antiviral treatment.
The greatest gift we have is her smile. Even though every day comes with a different challenge to overcome, Lyra is mostly a happy little girl who smiles, chuckles, and loves a good cuddle. James and Lucy have learnt what makes her tick – strong sensory movements, rocking, swinging, spinning, music, the wind or sun on her face, kicking her legs. She knows her mum and dad – their voice, their smell, how they touch her – whatever way – she knows them and smiles. And it is lovely to see.
Lyra has a younger sister, Amber, who shows love and understanding beyond her years.
Lyra has opened up a whole new world for all of us. The kindness of family, friends and strangers alike is humbling and heartwarming.
Lyra is amazing. James and Lucy are amazing. They would do anything for Lyra. Lyra continues to fight all that life has thrown at her. I love her to bits.
2019 Update on Lyra, now nearly 7 years old.
Wow, where have those years gone? They haven't been easy but a new 'normal' life settles in. She still has many medical problems but a jejunostomy feeding tube has helped stop the reflux and she is finally gaining weight and is stronger. Lucy tried the ketogenic diet to see if it would improve Lyra's epilepsy but sadly it did not. Lyra is in a lot of pain, awaiting an operation at the Evelina Hospital in London to sort out her dislocated hips. For now the operation has been put on hold as it is deemed to be too risky. She has steroids, botox and pain killers to help ease the pain.
Lyra is at a great school where they can meet all her needs. She has some respite care, hospice care and a specially adapted bedroom and bathroom. All of this was not without a fight but it was worth it. For sure, Lyra knows her mum, dad, her sister and much more. She smiles and giggles, loves music, movies and sound stories. She loves hydrotherapy, hippotherapy, the hot tub and just being out and about on a warm sunny day.
She is a little sweetheart x