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Diagnosis as a babyOur Stories


By December 22, 2021June 28th, 2022No Comments
September 2015
Four weeks before the due date of our second child, Mylo, a breech scan showed he had excessive fluid on his brain and his weight had dropped dramatically from previous growth scans. Initially, the prognosis was poor and we were advised of the many life-limiting conditions he could be born with and, subsequently, we were offered a termination. We would never consider this an option and proceeded immediately with numerous tests and MRI to ascertain what the medical condition could be. A week later Mylo was induced and born naturally. He was admitted to neo-natal after his birth to allow monitoring of the fluid on his brain and also to help him regulate his low body temperature and blood sugars and after a few days we were able to bring Mylo home.
We received most of the results back shortly after his birth which ruled out a number of life-limiting conditions but we were left with an unknown medical condition. It took a further 2 months for Mylo to be diagnosed with congenital Cytomegalovirus. This had been ruled out previously but came to light after further investigation. Although this left us very anxious upon reading the potential medical conditions that are associated with CMV, we also felt very lucky he was here was us and now and part of our family. Over the next few months it became evident that Mylo had problems with his muscle tone causing delayed physical development and had failed his hearing test in one ear.
The first year of Mylo’s life revolved around weekly appointments with a variety of medical professionals including physiotherapy, teacher of deaf, audiologists, and a specialist Consultant of immunology & virology. He was given medication for 6 months and had weekly blood tests to monitor this, which hoped to stop the virus doing any more damage, particularly to his hearing as this can often continue to deteriorate with CMV. Mylo is now 18 months old. He is the happiest, cheekiest and incredibly determined little boy. He lights up every room he enters with his beaming smile and infectious laugh. His physical development is still delayed although very much improving, he is now crawling and able to pull to stand. The professionals that work with him are delighted with his progress and believe, with a little time, he may be able to walk unassisted, which seemed a bleak prospect at one point. He has moderate to severe hearing loss in one ear and has recently had grommets implanted to help his hearing. We are aware that Mylo’s road could be a long one but at this moment in time we have a beautiful little boy doing magnificently – making his Mommy and Daddy very proud!
I became aware of CMV Action and when I read the mission statement ‘Educate, Vaccinate, Eradicate’ I wanted to help raise awareness for CMV Action. Knowing that in the future there is the possibility of a vaccine available to eradicate CMV, I wanted to do my bit to help make this a possibility. I am aiming to raise some money by completing in a number of organised events in 2017 along with a few friends.