Hi my name is Suzanne, I'm a mum to an only child.. Ethan Isaiah.
Ethan was born in May 2011, 4 weeks before his due date. I'd had a perfect pregnancy up until a scan at 34 weeks which showed Ethan to be measuring small.
I didn't realise how small although I knew my bump was tiny compared to others and didn't think much of it as I'm not very big.
I was asked to return 2 weeks later (36 weeks) for a growth scan. I arrived with my mum having told my partner that he didn't need to take time of work as it was just a quick scan to check Ethans size.
I knew straight away something wasn't right. Quick scan, some measurements and then a call for my consultant to come in.
He then scanned me and said Suzanne your baby is measuring very small for your dates and has not grown at all since your last scan 2 weeks ago, I'm sending you straight upstairs to the maternity ward. We need baby out, so go to maternity and we will prepare for a section. I was in total shock and selfishly asked if I could deliver him naturally. I knew this was going to be my only pregnancy and I only planned for a natural birth.
It wasn't to be and I'm so thankful now that it didn't go that way and Ethan was born by emergency section just a few hours after I'd arrived for my scan.
3lb 12oz breathing on his own
He thrived from the minute he came out.
It was originally thought that my placenta had stopped working causing Ethans low birth weight but when checked, it was fine. Ethan was treated for Jaundice and everything else was going well, he was feeding well and gaining.
We were allowed home after 5 days with Ethan now weighing 3lb 15oz
Everything was great till the 2 week test.
I got a phonecall from the hospital to say they had found the reason why Ethans birth weight was so low. I was in the car on my own with Ethan and I quickly tried to write down the big words I'd never heard of before and couldn't pronounce. All I remembered was CMV!
It was a Friday afternoon and I was asked to bring Ethan to Causeway Hospital on Monday morning to begin treatment, the doctor finished the call by asking me NOT to go home and look it up on Google. I was going to anyway.
Before I'd even started to drive home I called my partner in tears and panic. I didn't have a clue what CMV was, I'd never heard it before and that scared me too. What does my baby have that is so strange that I'd never heard mention of it before.
Got home, googled the symptoms and just fell to bits. It's awful to say it but after I'd seen the side effects I couldn't even look at Ethan because I was terrified that he might be blind or deaf and if I went near him I'd be able to tell.
I stayed in the kitchen for hours crying and talking to family on the phone.
When I did go and hold him again I had a little relief in that he startled at a loud noise and that his beautiful big saucer eyes seemed to follow me as I moved.
So Monday came, we arrived at causeway at 9am. We were put into a side room and told that Ethan would have a longline fitted and have ganciclovir treatment for 1 hour, twice a day. We waited till 5pm and nothing had started. I was extremely frustrated.
Eventually a doctor came and explained that they had never done this treatment before and would I mind taking Ethan to the Royal Victoria Hospital in Belfast to have the treatment. Tuesday morning we arrived at the RVH and met the consultant. She told us that cCMV wasn't a new thing, they've known about it for many years but treating it was pretty new and that in fact the RVH had only started treating it in the last 6 months and that Ethan was the 6th child to be treated there for cCMV.
We were taken to the ward and things got started. On the Wednesday I was told that Ethan would need a lumbar puncture, I couldn't bear the thought of it, he was a little over 4lb in weight.. How can they possibly perform a lumbar puncture on something so tiny.
We spent 6 weeks in the RVH
Ethan had an MRI, lumbar puncture, hearing and eyesight tests. Everything came back clear bar the MRI which showed a couple of spots on Ethan's brain that was either calcification of where there had been infection or a tiny bleed, either way they weren't concerned. After 6 weeks on the 10th of July Ethan was allowed home again to continue his treatment orally. That only lasted a couple of weeks before we were forced to stop as it had shot Ethan's immune system to bits but they were very hopeful that he'd had enough from the treatment to do as much as it was going to. Fast forward to 2020 and no one would have any idea what my wee mite has been through. He's doing well at school and is a happy healthy wee boy. We've been extremely lucking in that I caught CMV later on in pregnancy, they think around 29/30 weeks. As far as I'm aware, the earlier in pregnancy the mother contracts the virus the more devastating it can be for the child. Almost 10 years after I first heard of CMV I'm surprised at how little people are aware of this virus. I even had to explain what it is to nurses in our local doctors surgery as they'd never heard of it.
Thank you for taking the time to read our story and I look forward to hearing from others. Suz x