Monday, 1 June 2015

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.

17 comments:

  1. Oh Becky, I can't imagine how scary it has all been for you. And I know exactly what you mean about crying more for someone else than for yourself... I think that is a massive learning curve of motherhood.
    But Finn is just gorgeous and totally perfect, and I'm so pleased to hear that he appears to be doing so well. Whatever comes his way, at least he has a family who love him dearly fighting in his corner. x

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  2. It must have been so frightening Becky. But Finn is absolutely beautiful and I know that whatever comes your way you will fight it with him, such a lovely and supportive family. You must be so proud of him. x

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  3. Ah Becky what a scary time that must have been for you, so much to be positive about but still so much to fear too. You always seem like the most natural Mother and I know that your beautiful Finn will always have you fighting his corner xx

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  4. Oh Bex, thank you so much for sharing your (and Finn's) story. CMV scares the life out of me - I know from my IVF testing that I haven't had it and have no antibodies against it, so I worried all through my pregnancy that I would catch it and the twins would be harmed.

    He is such a precious, beautiful baby and was born into exactly the right sort of family to cherish him and fight for him, no matter what this diagnosis means for his future.

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  5. wow, thank you for sharing your story. What a tough pair of cookies Mummy and Finn are! It's so important for us Mums to keep sharing as we can never stop learning, or worrying about our little ones, no matter how many we have. I'm two down and none the wiser in terms of knowing what to expect next. Both have been so different proving there is no winning formula to this job, just a lot of guts, bravery and love needed. As well as coffee.

    Lucky Finn to have such a strong loving family x

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  6. Thank you so much for sharing little Finn's story. This all must have been so difficult on you and your family not to mention your little superhero (fighting away!). I am relieved for you that so far things have been going well and he is alright. :-) All the best xx

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  7. You are so incredibly strong. An inspiration and so is poor Finn. I'm glad he's doing well.

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  8. My heart was in my mouth reading this. What a scary time for all of you and definitely a learning curve - even after having two other children. I hope he continues to do well and doesn't even show any negative symptoms x

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  9. oh wow, id never heard of this before. how scary that first few hours must have been for you! x

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  10. YOU ARE AWESOME and I told you you would do brilliantly as would Finn, I am so lucky to be able to see you in RL and see how much he is changing already, keep fighting lovely, he is perfection, just a smaller version xxx

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  11. Oh wow! Emotional read. You guys are amazing. Beautiful boy! I wish you all the best in the future, and lots of love and happiness :)

    https://hellaturnup.wordpress.com/

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  12. It sounds very scary, but I'm glad to hear that he is doing well. He is gorgeous! x
    http://lilinhaangel.com/

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  13. It sounds so scary but he is a little fighter and so are you :)

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  14. Oh my goodness Becky, I had no idea things were potentially so serious. I'm so pleased he is doing so well, long may it continue xx

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  15. Oh Becky, I have been so busy in recent months I've been totally lost in my own family bubble and had no idea that you have been going through all of this, it must have been so difficult for you. It's great to hear that he is doing well and so lovely to see how much he looks like his gorgeous big brothers, a truly lovely family xxx

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  16. Thank you for sharing this story. I am so sorry that you have all had to go through so much. Being in SCBU is horrid enough in itself. Finn is gorgeous and such a little fighter, I'm so pleased to hear he is doing well!
    Becky xx

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