What happens when your baby is diagnosed with a life threatening disease?

What happens when your baby is diagnosed with a life threatening disease? - Oh Mumma

Every night between 1 and 3 am that angelic sound resonates around our house “Muummmeeeeeee”. Every night I kick my husband and say “your turn” but it’s never his turn it’s only ever me that my 2 year old wants.  I’m a geriatric Mummy, my first son Jasper, was born when I was 40 and my second son Cosmo, at 41 so I get properly tired with no sleep and wrinkles and grey hair!  It’s a cliché but I can remember the moment Cosmo was born.  Firstly, because he arrived in 28 minutes.  I had no signs of labour really, the odd cramp but then followed 10 contractions and thank god I was in the hospital, as he literally flew out.  As I held him in those first precious moments the world span a little slower and my heart burst with pure maternal love.

When you’re told at 23 years old that the likelihood of you ever having children of your own was seriously remote, you follow a journey of pure yearning.  Yearning for what all your sisters and girlfriends have, and that you could only dream about.  Well, it turns out that when you meet the right person dreams can come true.  Adam and I had a whirlwind romance that meant within 14 months of being together we were already engaged and I’d left my beloved Paris to move to Oxfordshire. We lost our first baby but it meant I could conceive, such a confusing time of grief but ultimately hope.  I fell pregnant 10 weeks later and Jasper arrived into our family in October 2016.  That’s the shock as we all know, that one day I’m a wife, working in London, commuting, having fabulous holidays (remember them??) and the next, I have a small being in my arms that is totally depending on me. I laugh now, as we returned from hospital and put him in his car seat on the floor and cooked Roast Chicken….but it’s as it should be for me, pieces of our family puzzle all clicking together, which when I realised 11 months later that I was pregnant again added a few more pieces to that precious puzzle.




So yeh; Cosmo arrived with gusto and had all the checks, got signed off and we were discharged super quick.  Sadly he must have picked something up in hospital as we were back in 3 days later, he had some weird virus rampaging through him.  Little did we know that we would have many many many more times ahead visiting hospitals around the Country with him. Why?? He was diagnosed (through my insistence that something was wrong) with Unicoronal Craniosynostosis – yup it’s like a Scrabble triple word score.  Adam and I wept and wept mainly because we had no idea what the hell it was and what it meant.  We have an amazing Paediatric Consultant and she was very kind in explaining everything but said we needed to choose one of the country’s 5 specialist hospitals and see more Doctors to get a clearer view of what was happening.  All Adam and I really knew was that our 3 month old son had a disease and if we did not have the operation that was offered, he would probably die.


So we made the decision to proceed (some parents don’t for their own reasons) having read a lot of medical reports and listened to numerous Consultants in their own fields.  He would be operated on and have a multi-disciplinary team of 12 to 14 Consultants supporting him and also us. BANG – panic, worry, despair, “nobody understands”, tears, tears and more tears. 16 April 2019, phone rings, the hospital have had a cancellation, can you come now?  Errr nooooooo, it’s too soon and he’s only 9 months old and what would you like me to do with his big brother who was 2 and half years old???  I shook for an hour after that call.  I got over it because Shannon was with me, she held me and said “you’ve got this, do what you need to do and Jasper can come and stay with us”.  That’s the moment I knew that I couldn’t hold it together, I couldn’t do EVERYTHING all the time, by myself.  Shannon made me realise I needed her and that I needed to lean on her and more than all of this, I needed to trust her to take my little Prince and mother him, cuddle him, love him as the rest of his pieces of the family puzzle went off to the big hospital so the Doctors could save his little brother.

We got through the 10 hour operation by sitting in a wonderful sun trap of a deli/restaurant.  We sipped one glass of wine each, held on to each other, prayed the phone wouldn’t ring to give us devastating news. When it did ring, we ran.  I hadn’t run like that since I was probably 8 or 9 years old and there he was in ICU with drains and monitors and blood but he was alive and the operation was a success.  I had 4 tins of Gin and Tonic that night and I wept and wept and wept through shear and utter relief that the decision we took had not ended his life, it had, we hoped given him his future and his big brother someone to grow old with.

Dark of the darkest days followed for Adam, he really struggled in the hospital and watching the recovery process take place.  It’s funny all the doctors and nurses always came to me as the Mum to give us updates, they never addressed Adam and it had an impact.  We again brought our baby home and put him on the floor in the hand-me-down car seat and again, I cooked Roast Chicken!

I spent a year handling people’s questions about Cosmo’s scar or the way he looked or “oh isn’t he walking yet?”.  People can be cruel without realising the impact it has on a parent.  It took me to lockdown last year, the anniversary when we were looking at photos from the operation visit.  It broke me.  I’m a pretty strong woman, I can foresee worry and anxiety, I deal with deep emotional situations fairly pragmatically and I am always there for my friends no matter what but I snapped.  I lost all direction and focus on what I’d done in making a decision, which could have killed my son.  I existed in a fog for about 2 weeks not understanding what was going on.  I didn’t really talk to anyone about it and it hurt.  I could sob for over an hour in the shower so the boys didn’t hear me, deep guttural painful sobs, they hurt at every cry.  


PTSD.  Apparently, it is quite common to suffer on an anniversary of something poignant to you.  I didn’t know and I certainly wasn’t expecting it.  And then it went. I still struggle to look at the photos but we made the best decision and now, Cosmo is hungry for life, he’s a go getter, an infuriatingly independent little chap with a zeal and zest for everything.  I was proud to be labelled his Mummy when he entered this World and I’m proud every day, when I look into his eyes and know that he has everything to live for…. even if it is 1.45am!


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