The arrival of your child is the most incredibly exciting and intensely frightening thing ever. The love you feel is just over powering and the terror that anything bad could ever happen to them eats you. That said, the idea that anything actually could go wrong doesn’t seem real. You’ve got them now, they’re safe in your arms and they’re perfect. As parents it’s your job to keep them safe. Unfortunately the reality for many parents is that, no matter what they do, they can’t. Sometimes the dangers aren’t lurking outside the safety of your home. They aren’t drunk drivers, violent paedophiles or vicious dogs. Sometimes the biggest most terrifying threats to your child’s life and well being are actually inside your child itself.
This was the reality presented to my friend Rachel, her husband Luke and their little boy (one of Miss Rose’s favourite people) Conor.
In Luke’s words this is their story…
“We were told that we’d never naturally conceive any of our children. To be told that IVF would be our only chance, we grabbed it with both hands.
So when we found out that Rachel was pregnant, naturally! We felt blessed.
Our 12 week scan amazed us and we excitedly started to discuss if it would be a Smurf or a Smurfette. And to be told that our baby was due 2 days after my late Father’s birthday, was fantastic!
At our 20 week scan, we found out we were having a Smurf, it felt like it was meant to be. We had multiple scans along the way, and a 4d scan at 28 weeks. So we got to watch our baby grow every couple of weeks.
At 39+5 weeks, on the 7th October 2012, on my Dad’s birthday. Conor Richard Norman made his way into the world, with an entrance that none of us will forget. Weighing 8lbs 1.5oz.
On the 15th October, Conor had begun to act odd, not feeding, shallow breathing and his legs had gone a purpley colour. Our Health Visitor called an ambulance and off to the hospital we went.
Over the next 5 days and nurmurous tests, we went from being told that Conor had a chest infection, to pneumonia. After a chest xray, it showed that his heart and liver had enlarged. Then after an Echocardiogram at Birmingham Children’s hospital, our world fell apart. Our tiny 11 day old baby had a life threatening brain malformation Called Vein of Galen.
Vein of Galen is a malformation of an artery to vein connection in the base of the brain. Because of this abnormal connection, extra blood is pumped to the heart, causing it to enlarge and begin to fail. it also causes the liver to imflame. http://www.gosh.nhs.uk/medical-conditions/search-for-medical-conditions/vein-of-galen-malformation
And within the next 2 days we found ourselves at Great Ormond Street Children’s Hospital, an environment that was surreal, and strangely comforting.
On Tuesday 24th October, we handed our life over to Conor’s amazing surgeon and his team. Leaving Conor in the operating, with the thought that we’d never see him alive again, ripped our hearts right from our chests. The minutes felt like hours waiting to be told that the operation had finished.
4 hours later, the surgeon sat us down and told us even though Conor had made it through, his heart had stopped twice. He said it was almost as if he had fought so hard, but his little body had given. If it wasn’t for the anaesthetist and the battle she did, we would have lost Conor that afternoon.
Everyday Conor grow stronger. When we were sat down and told the outlook was poor, Conor fought and proved everyone wrong! He came off the venilator after 5 days, quicker then any of the doctors and nurses had expected. And then a few days after that we were back on the Neurology ward, and then eventually back to our local hospital, all in the space of 3 weeks. Conor had lost over a lb in weight, and had a feeding tube. He started taking bottle feeds again and that meant we could go home!
In Febuary we were back for his second operation. Again he amazed the doctors by only being on the ventilator for 2 days and 5 days in total needing to stay in hospital. Conor’s surgeon told us that he was almost a 100% sure that he had managed to close off the extra blood flow and that this would be his last operation.
And that is what we were told on the 2nd October 2013, when we headed back to GOSH for the third time. Finally our little family could look forward to a future, that didn’t include anymore major surgery.
So now it’s our turn to give back for all the amazing work Great Ormond Street do. I am walking the Great Wall of China to say, thankyou. But we need your help too. We ask for you to spread Conor’s story to friends and family. Many of you have followed Conor’s story over the last 15 months and how how amazing his recovery has been. Some of you may have seen this amazing hospital in action for yourselves or someone you love.
This is the only way we can think of to show how much we appreciate the doctors and nurses for giving us our baby boy back.
Thank you for reading Conor’s story and our journey to pay back all that GOSH have given us…….
Love Luke, Rachel and Conor. XxX”
So to my fans, followers and friends I ask this.
Please visit their website: https://www.justgiving.com/Luke-Robinson5/
Please like their Facebook page: https://www.facebook.com/pages/Conors-Heroes/488261061283103?fref=ts
And please use #conorsheroes on Twitter.
The staff at Great Ormond Street Hospital give hope to parents and children daily and work so hard to make sure that other parents get the happy ending that Rachel and Luke have, and that other children get the chance at life that Conor has.
You can check out all my contact info an links on www.jjbarnes.co.uk, I’m on Facebook, Twitter and Instagram so you can get in touch on there, as well as find links to all my work. There’s also www.sirenstories.co.uk which has all the work by both myself and Jonathan McKinney and loads of extra content such as background stories for different characters. If you want to subscribe on Patreon, its just $1 a month to help support our work and it also grants you access to our extra podcast a week, you can go to www.patreon.com/sirenstories.
Thanks as always for reading, and I’ll speak to you soon I hope!