Tuesday, 3rd April 2012, around half four in the afternoon my life was turned upside down.
I was sat on my hospital bed when our Neonatologist said to me, “Mike has, Congenital [that means born with] Cytomegalovirus”. Admittedly it was the “congenital” part that sent me in a spin. I’m one of those people who watches the children’s health and hospital documentaries on TV religiously, so I knew it wasn’t good.
Following on from that announcement, she went on to list the vast range of problems my baby could have or go on to have.
We were dumbfounded.
My mind raced, how will I know how to care for him? How could I go back to work? Would our house need a wheelchair ramp? (I imagined a disabled person would certainly need a wheelchair. Clueless about the ‘hidden’ – although I don’t believe they really are; disabilities this awful virus could have inflicted on my little boy’s brain.)
That night I left hospital to come home and put my older baby to bed. The midwife thought it best, given I was distraught and unable to visit my newborn (we were being barrier nursed, over confusions about us as an “infection risk” to other patients).
I’ll never forget as my husband turned in to our road home, I physically felt my heart break. There Mike was in hospital, there I was in a car, a few miles away, having not seen him in twenty four hours or more; all I desperately wanted.
Precious moments in time, lost forever.
He should have been with me.
I remember that evening clearly, every so often just crying, and saying to my husband “what will we do?” He’d just hug me, entirely lost for words and hurting so bad too. I could find no comfort anywhere that night, not even cuddled up with my toddler in his tiny bed.
It took me a long time, if I’m honest, to find any comfort anywhere; again.
As the first few days of Mike’s life went by, we found out his hearing and sight were unaffected at that time. His brain scan had revealed some calcification and advice on what to expect was hazy (still is). Given there was no hearing change, we all decided that treatment with Valganciclovir was a good option for Mike.
Valganciclovir is a drug that acts like a chemotherapy drug. It wipes away the ‘bad ‘cells (so the CMV) while also wiping away ‘good’ healthy cells e.g. Red blood cells, white blood cells. In essence, it’s making a child more unwell but in the hope of limiting the damage the virus can cause them.
It did reduce Mike’s ‘viral load’ but shattered his immune system even more. He recovered well though and today he’s a ‘healthy’ child, which given his start in life, I’m amazed.
We’ve been through that much I could write a book, but reflecting on the four years of being this mum, there’s a few things I’ve learned and many I’m still learning.
It’s a constant distance to go, full of euphoric ups and desperate downs.
You always know your child better than anyone else
Doctors, therapists, other professionals, often have a tendency to view your child objectively and actually often that approach is entirely useless in regard to a child with special needs.
Particularly when it comes to Congenital CMV.
Taking a more subjective approach is much more helpful and I’ve found always has better results. The success of Mike’s behavioural therapy, is testament to this.
MIKE IS NO MORE CONTAGIOUS THAN ANY OTHER CHILD WITH CMV!!
The difference is, we know about his virus.
We don’t know about when and if ANY other children or adults, have the virus.
Most people have had CMV by the time we reach adult life, so it’s best for women expecting or wanting to get pregnant to check their immunity. Especially those who are mums or working with small children. Little ones are notorious for sharing bugs, especially this one! A vaccine is truly the only way to eradicate the harm of this virus, but in the meantime hand hygiene is all we have.
CMV or cytomegalovirus, is in a healthy adult or child is just a cold, often with symptoms that go entirely unnoticed.
Of anyone close to me who has had a baby since I had Mike, I’m the only one that didn’t already have immunity to CMV. My infection with Mike was my first infection so some would say it’s just a case of ‘being unlucky’ – I say it’s just life!
You become a broken record
This is the hardest bit for me. Our family life doesn’t follow a smooth course of kids developing at a nice steady rate.
Still age four, I have a little boy I am working on weaning, changing his nappy and trying hard to get him to sleep through the night.
It’s not a choice that he still relies on prescription formula milk from his baby bottle. It’s a harsh reality of avoiding tube feeds and ensuring essential nutrition gets in. He’s not physically able to eat like his peers.
He sucks his dummy in public, because his occupational therapist advised it as a strategy for him to self soothe in a world that terrifies him. I see the disapproving looks and they make me want to scream!
I’ve been wittering on about weaning for three and a half years now. I’m sure many people I come in to contact with wish I’d just shut up about it. I can’t though, these aren’t short lived phases like you go through with your typical kids it’s a daily struggle that doesn’t EVER catch a break.
You have to fight and fight
Things drag on forever and it’s so hard to be heard by professionals, it reaches a stage where you feel like people must think you’re making it up, because even you’re tired of thinking about the same thing.
Standing up for your child, fighting your corner and being confident in your research, it’s so hard to do and keep doing relentlessly. Your self confidence is shattered on the inside but on the outside, you have to make it look that you are strong, that you’re coping… That’s pretty exhausting.
People will say the most stupid things
So when Mike weighed all of 5lb or thereabouts and was taking chemotherapy drugs, so many people would say, “but he’s going to be fine!”
Well really what does that mean?
…Yeah it’s fantastic he’s here, being pumped with carcinogenic drugs, wrecking his fertility and destroying his immune system… It’s totally what you dreamed of for your precious newborn…
I don’t think I need say anymore on this one!
People will think it useful to tell you how like their typical children, your little one is
I know this one is meant with kindness but it entirely discredits the stress and emotional turmoil you are feeling.
For example, Mike’s eating problems are nothing to do with fussy eating – I have NO experience of dealing with a fussy eater. The thought alone stresses me out, having an older child who loves a balanced diet.
Mike won’t just suddenly turn less fussy and eat off a plate with his favourite character on or decide he wants to eat Spag Bol. Explaining over and over why these suggestions don’t work, is soul destroying. People still love to talk at me about this one though and it never stops emotionally draining me. I wish it would though!
You’ll never ever experience love highs or lows, quite like it
Mike I say, is my great leveller in life. His arrival turned the world as I knew it, upside down. Things I once took for granted in life I don’t anymore. Having happiness, health and independence is not a given. It makes me sad that the latter two, maybe are ongoing goals throughout his life but we will keep striving as we always have.
I remember in the early days saying to myself, picture what you want to do when everything is ok. The picture was the four of us, under one roof, doing normal stuff; days out, birthday parties, the food shopping… I got there: eventually!!
So 3rd April 2016 we celebrated his 4th birthday with friends and family.
Moral of the story, some kind of normality does resume. At some point!