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Diagnosis as a babyOur Stories


By December 22, 2021June 28th, 2022No Comments

December 1997

Lewis was born 3 weeks early on 23rd December 1997 following a normal healthy pregnancy.

The labour was not easy, but relatively quick being 4 hours in total but he was in distress and was very nearly a C section delivery. I went into early labour due to an infection.  He was born with the petechial rash which we were told was because he had come through the birth canal very quickly.

The following day we were told he had an enlarged liver and enlarged spleen and was taken to SCBU, we were then told they suspected toxoplasmosis, German measles virus or cmv and they would need to carry out further tests.  The consultant was encouraged by the fact he could suck a dummy and on boxing day he had a brain scan which didn’t show any spots of calcium which again was encouraging.  He stayed in SCBU until new years day when he came home with me, his dad and older brother Josh who was 2 at the time.

The following week we were called back to the hospital for the results where they confirmed to us Lewis had in fact been born with cCMV.  The consultant had only ever seen two babies previously born with cCMV as a junior doctor and therefore didn’t know an awful lot about it.  He obtained some information from Birmingham and London hospitals and informed us to expect possible brain damage, blindness, epilepsy and deafness as well as developmental delays.  We knew Lewis at this stage wasn’t blind or deaf as he had been tested but were informed he could develop these problems as time went on.

Well, he is now 16, 5ft 9 and a very handsome lad as can be seen in his picture taken on his way to his school prom last week.  Apart from deafness in his right ear, few behavioural problems at school when younger, not terribly good at organising himself, suffering from asthma and eczema (and pneumonia at 9 months) he has come through this really well.

He was slow to develop. He didn’t sit up until he was 9 months, crawled at 16 months and walked at 19 months, there was no stopping him then!!

He has just completed his GCSE’s which we are awaiting the results, having already passed his maths and English as he took them early. His passion is drama and has been involved in MYTS (Musical Youth Theatre, Stafford) for the past 7 years.  He has played the lead role in Peter Pan, Mr Tumnus in Lion the Witch and the Wardrobe, Thenardier in Les Mis, lead in Sweeney Todd and various others.  About to play Action, one of the Jets in Westside Story and in September will be joining Birmingham Ormiston Academy to study musical theatre having successfully auditioned and been accepted.

We as a family are massively proud and wanted to share his story to show some babies do come through this.