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AsymptomaticDiagnosis at birthOur Stories


By December 22, 2021July 4th, 2022No Comments

Hello, my son’s name is Jamie and he is 14 months old.  He was born with congenital CMV.

Pregnancy wise, everything was normal, I had 5 scans, all fine…

It was only 3 weeks before having my son that I got a sore throat but it was only during the nights though!! Strange!! I went to docs about it but was told it was just a virus so I didn’t think anything of it. I simply went home and carried on…

Jamie was born at 37 weeks and weighed 8lb 3oz, his head circumference was 34cm, nice and healthy, no problems other than a lot of pressure bruising on his face and one hand. The midwives said he was fine, checked him over and left him with me on the postnatal ward.

Despite myself and my husband being concerned about the bruising they told us he was fine, time and time again!!! I wasn’t happy so they had a Paediatrician check him over, that was all fine!!!

Only 12 hours later I still wasn’t happy and asked if they could check him again. He was fine, but to reassure me they did do a blood test to check his platelets.

The story of shock sadness and anger all begins from here!!!…..

Jamie was taken to the Neonatal ward and had some blood taken. 2 days later we received the shocking news, “JAMIE HAS CONTRACTED A RARE VIRUS CALLED CMV”!

He had low platelets and an enlarged liver and spleen, “AND I’M AFRAID HE MAY BE DEAF, BLIND AND SEVERELY DISABLED”! We were in total shock. All I wanted to know from that moment on was “Can he get through this and be ok????”

Jamie had his eyes checked first, they were ok, then his hearing which was also ok. Then for the big: one a MRI scan…

Jamie had no calcifications but he did have 2 bleeds which were grade 2’s.

During the time Jamie was in hospital he had 2 platelet transfusions and was very well and needed no other medical help, which was confusing as we were being told Jamie would be, or was, seriously sick.

We didn’t know where to turn or ask as no one had any experience in CMV. Different doctors told us different outcomes and said Jamie’s severity was on different scales. We didn’t know what to do!!!

Jamie came home from hospital 3 weeks after he was born, he did have wind problems which settled with Colief and from 6 months was fine. Jamie hit all of his milestones when he should have and is a very happy, alert, energetic child.

Jamie is only seen by his Neonatal doctor every six months, I thought that he would have been seen a lot more by ear specialists and other doctors, but no!!

I watch Jamie very closely as I am looking for something to change as I am terrified something is going to go wrong because Jamie has so far been lucky and so I think that somewhere down the line something will go wrong…

Jamie can still hear and see and is on target with development. He is hectic and has a bad temper apart from that and his own little quirky habits he is a lovely, happy child who likes to talk lots of baby talk and get attention from everyone! He’s also very cheeky and it’s a joy to be his mother!!!

– Submitted by his mother, Emma