Jessica was just 10 days old when a midwife visited the family’s home and noticed that she was unwell. She was sent to their local hospital in Worthing, Sussex, where after further tests the doctors said Jessica had suspected meningitis. Later, she was struggling to breathe and was put on a ventilator and rushed 60 miles away by ambulance to Southampton Children’s Hospital and admitted into intensive care.
“When they told us the news, I was heartbroken,” recalled mum, Stacey. “I hadn’t slept all night and was in a daze. Jessica’s dad went with her in the ambulance and I dashed home to pack some things and followed with my parents. That night we needed somewhere to stay, the nurses gave us a room in the hospital and told us about Ronald McDonald House Southampton. My parents managed to find an available room in a local hotel.
“While Jessica was in the hospital being treated for meningitis we stayed in the House. I was expecting a basic room, like the rooms in the hospital, but it was much better than that. We had never heard of the Charity before and felt overwhelmed by its amazing facilities for just a £25 key deposit. My mum actually cried; she was relieved we had somewhere to stay that was close to Jessica and wouldn’t cost us a fortune.”
After three days, Jessica was transferred back to Worthing and the family returned home. She was an outpatient, just going in for intravenous antibiotics. But Jessica seemed floppy and was not moving around much. Stacey was concerned and the hospital agreed more tests. An MRI scan revealed an abscess, caused by the infection, at the top of her spine that was affecting the stability of her neck (C-spine). Jessica was transferred back to Southampton by ambulance.
“I didn’t know what was wrong with her, but I didn’t expect that,” said Stacey. “When we left the House, I never thought we would be back again. But there we were, and Jessica was back in intensive care. This time we ended up staying for three months.”
At just 24 days old, Jessica needed a very complex spinal surgery to remove the abscess and she was deemed quadriplegic, which means all four of her limbs were paralysed. The doctors were unsure whether they could do the operation and it looked like Jessica would have to be transferred to Great Ormond Street Hospital in London.
“I was bracing myself for having to pack up again and be rushed to another hospital,” recalls Stacey. “What would that hospital be like? Where would we stay? Will it be close to Jessica? Will we have to pay for hotels? Ending up at Southampton was one thing, but being whisked off to London at a moment’s notice felt like an entirely different ball game.”
After 24 hours of planning, the spinal surgeons at Southampton decided to operate. It was a very complex surgery that took nearly 10 hours.
“It was two weeks before I held Jessica again,” said Stacey. “The doctors didn’t know how to safely lift her from the bed. Fears over her neck instability also meant we couldn’t dress her; I don’t think she wore clothes for the first month.
“The first time I held her was so scary. Two people carefully lifted Jessica and then lowered her onto a pillow that was on my lap. I could only hold her for about 10-15 minutes before she was taken off me and it took two people again to lift her and lay her back in bed.
“Jessica had to wear a neck collar and a papoose restraint to help immobilise her. We had to learn how to care for her and then after three months Jessica was discharged. Then about three weeks later, Jessica was sick during the night and had breathing difficulties. We called an ambulance and within hours we were transferred back to Southampton. She was diagnosed with pneumonia and while she was ventilated the doctors decided to do a follow-up MRI scan. I wasn’t expecting them to find anything; I thought she was OK, so it was a shock to hear that there was further compression on her spinal cord caused by a damaged bone in her back. She was only five months old and needed a second spinal surgery.
“The surgeons said they didn’t want to operate until Jessica was feeling better but the next day, they decided they had to deal with the compression. The plan was to remove the bone that was causing it and do a pioneering bone graft with the hope that would encourage the bones in her spine to heal and fuse together.
“The operation went well and afterwards Jessica had to wear a Halo brace – a metal ring that kept her head and neck completely still. She was the youngest child in Europe to be fitted with one. But within eight days Jessica managed to wriggle out of it. She was then put in a Minerva cast, a plaster cast from her head down to her waist, with spaces cut out for her face and abdominal feeding tube. This made Jessica more robust so handling her became easier. I learned how to position her, feed her, clean her; she didn’t have a normal bath until she was about eight months old.”
Stacey stayed in the House with her mum, and other family visited at weekends. “The staff in the House are amazing,” said Stacey. “I really enjoyed chatting to them and they know how to speak to you. I didn’t want people feeling sorry for me and asking me all the time about Jessica. The staff in the House and the families you meet understand what you’re going through and we’re able to have normal conversations. The hospital is not a normal environment and that’s one of the best things about the House, it brings normality to your life.
“It’s a place to relax and get away to. We stayed there for a long time, so the House became our home. It’s expensive in the hospital and so we purchased food from the supermarket and cooked our own meals in the House. It was comforting to be able to do that, like I was able to buy the same coffee that I enjoy at home and have breakfast before going to the hospital. There’s freedom in the House, you can sit in the lounge or kitchen and chat with families and staff or you can be alone in your room.”
After six long weeks, Jessica was discharged from hospital. Things went well, but then she was re-admitted to Southampton Children’s Hospital with breathing difficulties and fitted with a nasal tube to help open the airway. The doctors also discovered that Jessica had suffered a dislocated hip from the positioning of keeping her back straight and being rolled on her side. The family were back in the House for another three weeks while Jessica received treatment.
There was then a long run of being home for about five months, but then a routine MRI scan discovered more compression on Jessica’s spine. The doctors also said her jaw had fused, which meant she could not be incubated, so they fitted a tracheostomy – an opening in the neck so that a tube can be inserted into the windpipe to allow Jessica to breathe.
“While staying in the House I’d become close friends with a family whose child had heart problems and had been fitted with a tracheostomy,” said Stacey. “When I was told Jessica needed one, I didn’t feel daunted by it. I already knew what it was and how that family coped. It felt easier to deal with and I knew I had their support. If I hadn’t of met them, it would have been a completely different experience for me.”
Jessica spent another two months in hospital and her family stayed at the House. “Most of the time Jessica was clinically fit,” said Stacey. “She needed very specific treatment and had a daily plan so we couldn’t take her home, but we could take her back to the House with us and go out during the day. We tried to make life as normal as possible for Jessica, we had toys from home, her playmat and other things she liked. We’d sit in the lounge area and watch TV, play and read to her. We cooked in the kitchen and shared mealtimes together. I think it really helped her to be away from the hospital and experience things. If it wasn’t for Ronald McDonald House, we would have been sitting in the hospital by her bedside every day not doing very much. This would have been a real shame, especially as she was well and could do more. Jessica was fine and nothing happened, but if it had – we’d have been so close to the hospital and been able to get help.”
Jessica was transferred to her local hospital earlier this year and is now 22 months old. Stacey is trained in her care and they have now been discharged from hospital with a care package as Jessica requires 24-hour monitoring by carers.
“Jessica is now a resolving quadriplegic. She has movement in all four limbs, but she’s still not sitting on her own and she doesn’t have full head control. She has spinal cord damage and we don’t know how that’ll affect her in later life. It’s very likely she’ll need further spinal surgery and she’ll also need operations to reconstruct her jaw and fix her dislocated hip.
“Despite everything, Jessica is a very happy little girl. I sometimes wonder how she remains so accepting of her situation. Jessica is learning lots and making up for lost time. She is quite nosy and loves to be outdoors experiencing new things. Jessica is doing really well. The surgeons said they were very surprised she survived her spinal cord injury – she shouldn’t be breathing let alone moving. How well she’s done is a miracle.”