Rafferty Gunnar Binns was born on 27 February 2012. They say baby number two always comes quicker, well Rafferty was delivered by a paramedic on the bathroom floor! Not quite the delivery we had planned nor the long stressful birth I had anticipated.
The next two days we were all at home; Rafferty didn’t seem to feed well and seemed very quiet and content. It became a gradual worry especially as we noticed a few shakes followed by a distant stare and then hiccups, initially we took this as wind but we both became increasingly worried. On the 1 March, my wife, Nina, was on the phone voicing our concerns to a midwife and I was holding Rafferty in my arms when his eyes rolled back into his head, his face went bright red and his body crunched nearly in half. In that split second I thought he was dead.
Rafferty was rushed to our local A&E at Southend University Hospital and onto the paediatric intensive care unit where over the next week he would continue to have these violent seizures. Eventually our local hospital felt they were not controlling the situation well enough and it was agreed that he should be moved nearer to the expert neurologists in London. Rafferty was transferred by neonatal ambulance to The Royal London Children’s Hospital in Whitechapel on 9 March.
When we arrived in the hospital the nurses in the Paediatric Critical Care Unit were quick to advise us there was a charity called The Sick Children's Trust who may be able to provide a room for the night. We were incredibly grateful for this night's accommodation; little did we know at that time that it would really become our home for the next few months.
Arriving at Stevenson House we were blown away by what a fantastic place it was, the staff were welcoming and caring, the rooms and facilities far beyond what we expected.
We were able to be at Rafferty's bedside from the early hours to late at night and it gave us much needed rest knowing that we were only minutes away.
Dealing with a sick baby was terrible enough but we also had Rafferty's older brother, two year old Nathaniel at home, who was very confused as to why his brother was no longer at home and why he was spending so much time with his grandparents.
Having the room at Stevenson House meant that Nathaniel could stay with us all week and we could each alternate our time between both boys. Rafferty's condition did slowly decline, but he was no longer required to stay in Critical Care and was transferred to a room in children's ward 7e. During this time we could now spend all days together as a family again from the morning until late night knowing that we were in rush or panic to have to travel all the way home. On the rare occasions we were all apart even having the internet connection in the house meant that we could Skype - little things that really helped us get by.
Nathaniel grew very fond of Stevenson House, he made lots of friends with other children of a similar age and enjoyed playing for hours with the trains and building blocks. He also enjoyed watching the vast selection of kids movies, a few of which we've now had to go and buy ourselves! The kitchen in Stevenson House was fantastic; it has enough room for several families to manoeuvre and enabled us to cook some proper food instead of living off sandwiches.
After undergoing many ECG, CT and MRI scans, multiple lumbar punctures and seemingly endless blood tests Rafferty was diagnosed with Early Infantile Epileptic Encephalopathy, also known as Ohtahara Syndrome. By the end of March, he was having seizures every 30-40 minutes, 24 hours a day which increased to about 60 seizures a day by 5 April. Most seizures took him four minutes or so to breath properly afterwards
By May they were considering sending us home to spend as much time together as possible but on the 17 May, Rafferty went into status epilepticus (a non-stop seizure) and we were told he wouldn't survive the night. Although he did make it through that night, (his seizure lasted over eight hours) three days later he went back into status and this time the medication that saved him previously had no effect.
The hospital arranged for a transfer to a children’s hospice for end of life care so we could spend his last few hours together in a better environment.
The next morning Nina travelled with Rafferty whilst I packed and tidied up our Stevenson House room. In total we spent an incredible 75 nights at Stevenson House. We will forever be indebted to the SCT for making a difficult time that little bit easier and allowing us to spend as much time as possible together as a family during a very uncertain time.
Amazingly Rafferty never gave up and two weeks later was discharged from the hospice. 100 days after he first left in an ambulance he had finally made it home.
The Sick Children’s Trust strives to be a 'Home from Home' and I can’t sum it up than the fact that two months on Nathaniel keep asking to go back to 'our London house'.
Jon Binns, Rafferty’s dad
