“When I look back now I remember only pain and guilt,” says Stacey, Tiffany’s Mum. “I am left with PTSD and complex grief after three years of living on a hospital ward. I lived in one room, panicked that every day would be Tiffany’s last.”
After two miscarriages, Stacey was thrilled to discover she was expecting a baby: “We were so excited when we found out I was pregnant. Everything was completely normal, we were unaware and unprepared that anything would be wrong with our baby.”
Tiffany arrived a few weeks early and initially the Doctors thought she had a blood clotting problem so she went to the neonatal unit. She had some bleeds on the brain and test results soon revealed that these had caused damage to her brain tissue. “It was an unbearable time. We were absolutely terrified.”
Stacey and Tiffany were moved to another hospital with the hope of inserting a shunt but medical staff were unable to perform the surgery. Tiffany was sent home with her family to receive palliative care.
“We wanted to take it day by day and make memories with her, but less than 24hours later we were back in hospital.” From then on, Tiffany would spend the majority of her life on the ward: “She would come home for a few days, and then she would be back in for months on end.” Tiffany struggled to regulate her breathing and couldn’t tolerate feeds, resulting in recurrent aspirations. By nine months old, Tiffany had to be regularly moved from side to side, all through the day and night.
When things got worse
Just before her first birthday an MRI was performed and the devastating news was delivered: “The Doctors told us that she wouldn’t live much longer. We knew time was short.”
Stacey battled to control her feeding, spasms and suctioning. “Not all of the nurses were trained on the ward and so I could never leave Tiffany because she had to be watched 24hours a day. I had to be there all of the time, and I was scared of what could happen if I left.”
In January 2019 hospital staff realized Tiffany had a femoral fracture and she was further diagnosed with brittle bone disease: “From then on, we didn’t leave the hospital until she died in September 2020. I didn’t leave her side, we were together constantly.”
“We used our local hospital and although we had an amazing team of doctors they were overwhelmed by all of Tiffany’s symptoms. She was by far their longest and most complex patient.”Tiffany's mum, Stacey
Longing to be home
Stacey and her family desperately wanted Tiffany to be at home where they could spend time together as a family but there were so many barriers which made this impossible: “Even when a wheelchair was made that was appropriate for her, we were told it couldn’t be used for transport even in an ambulance. We also struggled to access the overnight care that we would need at home. There was no choice but to stay in hospital. It was out of our hands.”
Stacey stayed on the ward with her daughter, turning her from side to side, 24 hours a day. “At times she was really distressed, and her weekly fractures and pressure sores caused a lot of pain. She was constantly vomiting and we were always fighting to control her symptoms. She had a pressure sore down to the bone as her nutrition was so bad.”
“But we made the best of it. Her time was like a never-ending bucket list from buying land to gain the title ‘Lady’, to getting senior members of the hospital to agree to a Unicorn on site and a cinema experience. Her consultant wore fancy dress for her birthday!”
“Life became very isolating for me. I was alone a lot of the time. Doctors would come in and deliver devastating news and then carry on with their ward rounds and you were left reeling and alone.”
Knowing time was short and always being questioned about Tiffany’s quality of life Stacey felt an immense pressure to make as many memories as she could with her daughter: “There were so many hospital policies which meant that there were lots of things we couldn’t do with Tiffany. It was a constant battle. I was exhausted.”
Tiffany’s bones started to break daily and to keep her comfortable she would have casts put on but over time she would develop pressure sores on her skin. She had regular urine infections and was often placed on IV antibiotics. “She was so distressed when she had an infection and her temperature would shoot up but because she was unable to control it, it would result in cerebral agitation.”
Stacey’s only wish was that they could bring their little girl home. This wish never came true.
I called Together for Short Lives’ helpline one day, as I wanted some advice and support. I was really pleased to speak to somebody and chat through what I was feeling and what I was concerned about.
Every memory good or bad is in that hospital room. Three years in the hospital. Her whole life lived there.Tiffany's mum, Stacey
Managing Tiffany’s pain
As time passed, keeping Tiffany’s pain under control became profoundly difficult: “She would spasm and cry out in pain. She was so distressed. It was so traumatic. She was taking so much morphine and on two syringe drivers at this point. But nothing was working.”
At the end
From May Tiffany started to deteriorate and Rib fractures were affecting her breathing. By August “She was so distressed, screaming out. Her pain management was now uncontrollable. She wasn’t tolerating anything. Tiffany was now on three syringe drivers and was prescribed the highest dose of morphine they had ever seen at the hospital. But she was still screaming. She soon developed morphine toxicity which only made things worse.”
National experts in London were liaised with and different medications were tried and they had better control of her pain. Within a few days, Tiffany passed away in hospital.
“Now, when I look back I can only remember her suffering at the end. It’s hard enough to have lost my daughter, but I lost everything else too. Friends, my identity, my career. Coming out of hospital, I didn’t have Tiffany but I didn’t have anything else either.”
“Every memory good or bad is in that hospital room. Emphasis was always on getting her home, but there were so many restrictions and so many barriers. It was impossible. It’s not what we would have ever wished for. Three years in the hospital. Her whole life lived there.”
Now Stacey lives with PTSD and is unable to leave her house without experiencing flashbacks.
“When you live in one room for that length of time with that constant panic that she will die today, it’s hard to ever recover. Everything fell to me. When you are going through it, you push your emotion down so that you can cope. It’s the only way. You become robotic just to get through the long days. She went through so much and experienced so much. I had no choice but to stand and watch it all. That has taken over all of the good memories. It’s only sadness, guilt and pain.”