My cCMV Baby

On February 25th I gave birth to a baby boy.  He was perfect.  His bright dark eyes immediately found me, his lips formed a sweet pout and knew they wanted milk before I knew I wanted to feed him and his tiny nose connected him to his brothers straight away.  His feet were soft and smooth having never born his weight and his little hands curled into fists in anger at entering a cold and scary world.

Our baby boy was born with a virus called Congenital Cytomegalovirus or cCMV, a virus so common yet so rare.  At 12 hours old he was found to be jaundiced and at 24 hours old he was admitted to SCBU.  His blood results showed us he was fighting something massive, and he had every possible to test to try and determine what.

At 4 days old we finally received a diagnosis.  We held our perfect baby boy, and we were told he was born with this virus.  We were told that 70% of babies born with symptoms will survive, but that nearly all of them will have lifelong difficulties.  cCMV can affect hearing, vision and the central nervous system.  We were told our baby may be seriously disabled.  I held my baby tight as I was told it was lucky that it had been detected so early, as the only treatment available was effective only when started within the first month of life.  Finn began a course of antivirals so toxic that the nurses had to wear protective face masks and gloves when administering it, so toxic that he had to be closely monitored and with a planned length of six weeks.  We were told that the next few days would be full of tests to determine what this virus had affected so far, but that even a positive result now didn't mean that we were out of the woods as children can be affected at any time (although typically is begins in the first few years of life).

It took less than 30 minutes to be told that we were so incredibly lucky, yet so incredibly unlucky at the same time.  Our baby was born alive and fighting, but it may be a life long fight.

We are pleased to say that at the moment, Finn is doing so well.  No part of his journey so far has been easy, but his optic nerve is not damaged and he currently has full hearing in both ears.  The MRI showed results consistent with cCMV, but no calcifications and he is developing well.

From those two blue lines over four years ago, I have been constantly learning,  I learnt how to look after a baby, to hold him, feed him, change him.  I learnt about MY babies, how to make them smile and laugh, how to sing their favourite lullaby ten times in a row, how to capture their imaginations.

The biggest things I have learned though are about me.  I have learned that I an cry more when someone else is hurt than when I am.  I have learned that I am capable of caring for three small boys and I have learned how strong a mother's instinct is.  I have learned that I am strong, and that I can cope with whatever is thrown at me, although there may be many tears and plenty of chocolate consumed to help.  I have learned about the amazing network of family and friends I have, and how people can come together and I have learned that despite thinking I know how to parent after having two, you may just get a baby who rewrites the whole book.

We have no idea what the future holds, but we have a perfect baby boy, with bright dark eyes, a tiny button nose and little hands that cling on to me so tight.

Most people contract CMV as a toddler, and so catching it for the first time during pregnancy is very unlikely.  To reduce the risk, you should not kiss children on the mouth, share cutlery or drinks with them and always wash your hands well after coming into contact with any bodily fluids, especially after changing a nappy.