We knew something was amiss with our pregnancy when a routine scan highlighted a bright spot in the bowel. I have to say the pregnancy had not gone well up to that point, with my wife feeling unwell (but not morning sickness) for most of it. Also our daughter was not developing as expected. Time went on and eventually our daughter was born by emergency caesaran, weighing 4lbs and 2 weeks early. She was taken to the neonatal unit for close care. At the time we noticed she had pin prick red spots all over her. She had difficulty maintaining her temperature so was put on a water bed. My wife was also having some discomfort and so both stayed in hospital for a few extra days.

When mum and daughter finally got home we had one morning of bliss before the Paediatrician phoned and told us that our girl had congenital CMV. Not knowing what to do I got in the web ... big mistake. Unfortunately for our midwife she popped in to see how we were getting on, to find us all in tears. The midwife had little experience of CMV and wasn't able to help, save for emotional support (which was really appreciated).

Our daughter then went through a series of tests - hearing (brain stem), X-ray of skull (for calcification), eye examination (reflex/blindness). The hearing test threw up a possible issue. The X-ray and the eye examination were clear. All through this process our daughter's platelet levels were improving (from a very low level). The Paediatrician consulted widely (Great Ormond Street and Yorkhill, Glasgow) and initiated a schedule of blood tests. We also talked at length about interventions such as the use of Ganciclovir. After much consideration and taking into account how our daughter was presenting, we decided against the treatment.

That was back in March/April 2003. Today our daughter presents as a bright, mischievous and loving foil to her big sister. She attends daycare and, with supportive information from ourselves, appropriate precautions are taken while she is still excreting the virus. My wife and I still worry about her development (a common concern for all parents with more than one child) and the consultations continue, but with a lesser intensity.

We had a real shock when our second girl was born, but I have written this to help explain that congenital CMV presents across a range of severity. We feel extraordinarily lucky to have her with us today.

I wish all the best to you and yours.

[i:637a3ffab5]This message was automatically imported from the original Patient Experience[/i:637a3ffab5]

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