Mum’s heartbreak at having to ban her five-year-old daughter from playing with her friends – because the smallest cut or bruise could kill her
Toddler Skyla Budding, from Merthyr Tydfil, suffers with a rare disorder called idiopathic thrombocytopenic purpura (ITP) which means her blood doesn’t clot and leads to excessive bleeding
AN energetic little girl has been told she can no longer play with her friends – because one small cut or bruise could kill her.
Skyla Budding, from Merthyr Tydfil, suffers with a rare disorder called idiopathic thrombocytopenic purpura (ITP) which means her blood doesn’t clot and leads to excessive bleeding.
Her mum Sarah Markham says she’s had no choice but to stop the active five-year-old from enjoying some of her favourite hobbies.
“It was really important that Skyla didn’t do anything that would cause her to bruise or to cut herself,” she explained.
“So even when we weren’t in hospital having treatment, she still couldn’t do any of the things that she loves to do like riding on her bike or jumping on the trampoline.
“Even playing in the yard – on the days she was well enough to go to school – was too dangerous, so she’d have to sit on her own while the other children played.
“Witnessing that as her mum made my heart feel like it was going to break.”
Skyla was diagnosed with acute lymphoblastic leukaemia (ALL) when she was just four years old.
Sarah said the only outward sign something might be wrong was her daughter’s tendency to bruise very easily.
But doctors referred Skyla to the Noah’s Ark Children’s Hospital for Wales in Cardiff when her blood count was found to be incredibly low.
It was there, after a biopsy of her bone marrow, that Skyla’s parents were given the devastating leukaemia diagnosis.
Sarah added: “The doctors couldn’t believe it when I told them Skyla had never really been ill as she didn’t really have an immune system.
“To have my little girl’s name associated with the biggest of words – cancer – was awful.
“One minute we were living this normal life and the next everything was completely different.
“We were in hospital with our sick child being told that she had two-and-a-half years of chemotherapy ahead of her.”
Little Skyla started her first course of chemotherapy almost immediately and spent nine nights in the children’s hospital.
Despite treatment going well initially, her platelet levels started to drop way below the normal range of between 150,000 and 400,000.
In June, with her platelet levels at an all-time low of 5,000, she was diagnosed with (ITP), a rare disorder that can cause excessive bruising and bleeding due to unusually low platelet levels.
She started receiving regular platelet transfusions alongside her chemotherapy in an attempt to increase her levels, but they only worked for a few days each time.
Then disaster struck just days later when Skyla was sent home from school with a suspected stomach bug.
Sarah said: “There were a few bugs going around so I brought her home and laid her on the settee, but every sip of water she was vomiting up.”
She took Skyla back to the Noah’s Ark Children’s Hospital where she was put on a drip and admitted as a precaution.
By the following morning, Skyla’s condition had deteriorated so much that her consultant requested an emergency brain scan.
Sarah, who arrived just in time to see her little girl being taken away, added: “After a while we were told that Skyla had been taken straight to intensive care, which we were warned might happen.
“When we arrived we were met at the door by the consultant who took us to a room and explained that the scan results had revealed a huge bleed on Skyla’s brain.
What is idiopathic thrombocytopenic purpura (ITP)?
Idiopathic thrombocytopenic purpura (ITP) is a bleeding disorder in which the immune system destroys platelets, which are necessary for normal blood clotting. People with the disease have too few platelets in the blood.
It occurs when certain immune system cells produce antibodies against platelets. Platelets help your blood clot by clumping together to plug small holes in damaged blood vessels.
The antibodies attach to the platelets. The body destroys the platelets that carry the antibodies.
In children, the disease sometimes follows a viral infection. In adults, it is more often a long-term (chronic) disease and can occur after a viral infection, with use of certain drugs, during pregnancy, or as part of an immune disorder.
ITP affects women more often than men. It is more common in children than adults. In children, the disease affects boys and girls equally.
Symptoms can include easy bruising, nosebleeds, bleeding in the mouth and abnormally heavy periods.
In children, the disease usually goes away without treatment. Some children may need treatment.
In rare cases, ITP may become a long-term condition in adults and reappear, even after a symptom-free period.
Information supplied by MedLine Plus.
“It’s basically the worst case scenario for someone with ITP and our little girl was living that worst case scenario.
“I was so scared that I was shaking and I felt like I was going to be sick.”
The five-year-old was attached to a device which monitors the pressure the bleed was creating on her skull in the hope that it would gradually decrease.
But the results from the first reading indicated that it was already too high.
Sarah, along with and Skyla’s dad Anthony, were told emergency surgery would be needed to remove part of her skull to alleviate the pressure on her brain.
“I knew by the tone of the doctor’s voice that things weren’t looking good.
“With everything that had happened in the last year, I’d trained myself very well to be positive – but at that point it just all fell away.
“I spent that whole time Skyla was in surgery preparing myself for them to walk in and say that we’d lost her and wondering whether her baby sister, Billie, would even remember her.”
After four agonising hours, Skyla returned from her operation attached to a life support machine.
The surgeons had found the bleed in the optical part of her brain which could already have caused blindness or brain damage.
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But as there was no way of knowing until Skyla woke up. They just had to watch and wait.
“The care Skyla received in critical care was astonishing,” Sarah added.
“I have never seen nurses work so hard in all my life.
“During the first few days the specialist nurses were constantly on the go to care for my daughter. It was a real eye-opener.”
Skyla was unconscious in intensive care for a week but – true to her dramatic form says her mum – woke up on Sarah’s birthday.
Amazingly the schoolgirl was well enough to be discharged onto the surgical ward only a few days later and having spent a week there, is now back on Rainbow Ward ready to restart her chemotherapy.
“Skyla lost her left field vision as a result of the bleed,” added Sarah.
“Although I was completely heartbroken by this, I’m just thankful she’s alive and could never thank the neurosurgeon that operated on her enough.”
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Last month we told how a mum realised her "clumsy" baby girl’s bruises were actually leukaemia – after reading about teenager that died of the same disease.