The parents of brave toddler Poppy Sinnott will be back at her bedside tomorrow praying life-saving brain surgery goes ahead.
A week ago the couple were left devastated after a six-hour operation to remove a rare tumour was called off at the last minute because a specialist hospital ran out of high dependency beds.
Today, the distraught family from Fulwood returned to the Royal Manchester Children's Hospital hoping 16-month-old Poppy could finally go down to theatre tomorrow, two months after her condition was first diagnosed.
“After what happened last Friday we’ve been stuck in this horrible limbo not knowing if it’s going to be cancelled again,” said mum Katie, who works for the NHS in Lancashire as a research nurse.
“I’m not blaming the staff. They are doing all they can. But the whole thing is an absolute nightmare.”
Poppy was made ready for surgery in Manchester last Friday morning - the surgeon had even drawn on her head to mark where the tumour is located. The family had got up at 5am that day to get her to the hospital in time.
“We went through all the paperwork and discussed what was going to happen during and after the operation with the surgeon and the anaesthetist,” said dad Colin.
“We waited over three hours watching all the other patients leaving for surgery. When we saw the surgeon coming towards us, we thought it was time for Poppy’s surgery. Unfortunately it wasn’t.
“He had come to tell us the operation couldn’t go ahead because there wasn’t a bed for her after surgery. My wife was inconsolable. I was just angry.
“The longer the tumour is left in her brain, it is likely to cause even more damage.”
Today Poppy, who has a five-year-old brother Jack, is having a fresh set of blood tests and her parents are staying with her overnight at the hospital ready for surgery to hopefully go ahead in the morning.
“We’re just praying we don’t have a repeat of last Friday - we wouldn’t want to go through that again,” said Katie.
“Last week we went there prepared for the operation to happen. Before that day no-one had mentioned anything about it being cancelled.
“It was only when Poppy was in the room where they were preparing her for surgery that a nurse happened to mention there was a risk that it might have to be called off if there wasn’t a high dependency bed.
“We then started to get anxious. But the neurosurgeon told us not to worry saying, ‘They always say that.’ He drew on Poppy’s head and went through all the risks. He told us there was a chance she might die, or have a stroke. All those horrible things.
“Then the anaesthetist came and did her checks and everything was good to go. She reminded us it could be cancelled and even said one had been cancelled the previous day because of a shortage of beds.
“It got to about 10 o’clock and the neurosurgeon came back and apologised, saying there was nothing he could do. They didn’t have a high dependency bed or a bed in intensive care.”
So the Sinnott family packed up Poppy’s case and took her back home to Preston.
Katie and Colin first noticed all was not well with her in April. “She started going vacant and clicking her tongue a bit,” explained Katie.
“We took her to hospital twice, but no-one seemed too concerned. Someone even said that maybe it was down to teething.
“Things started getting a bit worse and her face started twitching about six or seven times a day. They booked her into hospital and started treatment for encephalitis or meningitis. They thought it was an infection and started treating her with antibiotics.
“Poppy then started having seizures - at most around 10 a day. She’s had medication which helps for a while, but then they return.”
Colin added: “We have wasted months because the doctors told us Poppy’s seizures where down to teething and when the seizures got worse they said babies do strange things. But eventually we saw a doctor who thought the same as we did that something else was causing the seizures. The medication to control the seizures no longer works so it was crucial that the operation was done.
“When you look at the amount of money wasted (last Friday) because a bed was not available, it’s ridiculous. There was the surgeon, the anaesthetist, the theatre nurses - all sat around unable to do anything and a theatre not being used because there was no bed available for Poppy. There is no guarantee the operation will go ahead tomorrow either. It’s not acceptable that babies are left to suffer because there are no beds for them.”
The hospital says ...
A spokesman for the Royal Manchester Children’s Hospital said: “We are very sorry that one of our patients has experienced a delay in their planned surgery.
“We will continue to liaise with the patient’s family and would welcome the opportunity to discuss their concerns with them further.
“In line with patient confidentiality, we are unable to comment on individual cases.”
Mum Katie added: “I have spoken with one of the managers at the hospital as I had lots of questions for them. They stated that HDU was running to capacity and that there were no staff shortages on the day.
“It was a decision that was not taken lightly and everything will be done to ensure the surgery goes ahead this Friday. However there is still a possibility of a cancellation if there is a clinical emergency.
“She answered all of my questions and was understanding of my frustrations. But the demand for HDU is increasing, with more children needing additional support.”