My baby George was born at just 23 weeks and six days into my pregnancy. It was a terrible shock when I went into hospital with backache and was told I was already in labour. Although the doctors tried to slow everything down and delay his arrival using different drugs, there was only so much they could do and George was born on 10 July 2018 weighing just 700g. He was so small and I didn’t think he was even alive, but six minutes later the doctors on the Jessops Wing at Royal Hallamshire Hospital managed to intubate him and told my frightened partner, Daniel, and I that he was as stable as they could hope for.
Since those crucial first minutes of George’s life he has had to battle for survival and our resilience has been tested every step of the way. We have been supported through our journey so far, not only by the love of our families and friends, but also by the hospital staff, other Mums and Dads we have met along the way and an amazing charity called The Sick Children’s Trust, which made it possible for us to stay close to George’s bedside during the toughest moments.
At only six days old, George became extremely ill with necrotising enterocolitis (NEC). NEC is a serious illness in which tissues in the intestine become inflamed and start to die. He underwent emergency surgery in a bid to save his life. Time stood still. We were sure we had lost him, but miraculously he held on and had the infected part of the bowel removed and was given a stoma, which is an opening on the surface of the abdomen through which he would pass faeces. If he survived George would no longer be fed milk through his nasogastric (NG) tube and was to be transferred over onto total parenteral nutrition (TPN), which meant all his nutritional needs would be delivered directly into his veins via a Broviac® line, bypassing his digestive system altogether. That wasn’t all though. During the operation George’s liver was damaged accidentally and he lost 50% of his blood, suffered permanent brain damage and was given just hours to life. We had him baptised and prepared for the worst. Thankfully this never came, but since that first surgery and becoming so sick George can no longer move.
This was the first of four complicated bowel surgeries. George contracted NEC again and he also suffered from a perforated bowel on two separate occasions. Each time we thought we had lost him, but our brave baby wasn’t going to give up without a fight and he clawed his way back from the brink of death. At five months old he was big enough to be transferred over to Sheffield Children’s Hospital, which meant we were able to move into Magnolia House run by The Sick Children’s Trust. It is a ‘Home from Home’ located just a couple of minutes from the intensive care unit where George was being cared for and meant I could be by his side in an instant, something I had really struggled with. I had found it very difficult to leave George on Jessops Wing each evening, knowing he was so unstable and that, if he had a bad turn in the night, I might not make it back in time.
“We quickly learnt how to administer George’s care because we were only ever moments away from him at Magnolia House and this helped us get back home sooner.”
Being able to stay in a ‘Home from Home’ changed everything, especially my mood and frame of mind, which in turn helped me be stronger for George. Compared to where we had been staying in Jessops the facilities were fantastic. Until we moved in we didn’t appreciate the difference having a private cosy bedroom, clean bathroom and access to a fully stocked kitchen would make, but I can’t describe how much it helped. Just to be able to make yourself tea, like you would if you were at home, helped restore our sanity. The staff were friendly and kind, doing their best to make the lives of each family as easy as possible and we really felt like we had a support system in place. Daniel was able to commute from Magnolia House to work every day, which meant he could see George each morning and night and whilst he was gone I made friends with other families who had babies on the same ward. We could never have afforded to stay in a hotel in Sheffield and the petrol costs to and from our home in Worksop each day would have crippled us financially. Plus I don’t think I could physically have gone any further away from my baby, who needed his parents with him. During his darkest days he knew we were there willing him on.
Because George was born so prematurely the blood vessels in his eyes grew abnormally, which caused damage to the retina and his vision. He has had to have two eye surgeries, the second to remove a cataracts that had developed in his right eye. He was flown from Sheffield to a specialist eye hospital in Oxford by air ambulance for the initial consultation and today we still don’t know whether he will be able to see out of that eye when he is older; we remain hopeful though and, so far, our brave boy has proven everyone wrong. When he went back into hospital for the second operation we were able to stay in Treetop House, another ‘Home from Home’ in Sheffield run by The Sick Children’s Trust. Like Magnolia House, it was a lifeline, and we quickly learnt how to administer George’s eye care because we were only ever moments away from him and this helped us get back home sooner.
George is now on the waiting list for heart surgery at Leeds Children’s Hospital. We know The Sick Children’s Trust have another ‘Home from Home’ there too and so when the time comes we just hope they will have a room available for us at Eckersley House. Of course, Daniel and I are very anxious about what the future holds for our precious baby and at the moment we spend a lot of time at Sheffield Children’s Hospital attending various appointments. George is six and a half months old, but still only weighs 6 lbs 8 oz. He has many health complications and has been through so much, but we are hopeful that we are over the worst and we could not be more proud of our special boy. I have set up an Instagram account called @georges_journeyy in the hope of connecting with other parents who have a similar experience or possible knowledge of why George can’t move his limbs.
There will be plenty more hospital admissions in the future and many more bends in the road, but we will stay positive and know that when we need them The Sick Children’s Trust will be there to keep us together as a family.
Hanna Rose, George’s mum.
