Little Lillie is a medical mystery, says her Swindon dad

But Richard and Nikki Christie have not abandoned hope of shedding light on the cause of Lillie’s mysterious condition and see her fit and healthy again.

“LILLIE is a medical mystery,” sighs Richard Christie.

When their three-year-old daughter Lillie was rushed to hospital with alarmingly low haemoglobin levels, Richard and his wife Nikki were understandably anxious.

The little girl received a blood transfusion and was soon discharged. Buoyed by doctors’ assurances she would fully recover, they pushed doubt out of the minds and focused on nursing her back to health.

Little did they imagine that in a mere eight months Lillie would be back in hospital, a drip feeding blood into her frail body once more.

Nearly two years and no fewer than nine blood transfusions later, her mystifying condition continues to evade doctors.

“When we first started going to Oxford for blood transfusions and we were on the ward surrounded by cancer patients it really hit home, what it could be,” says Richard, 34.

It was not the first time however that Lillie’s symptoms had puzzled doctors. As a baby she began scratching furiously, forcing her parents to wrap her in sleeping suits. No signs of eczema were visible however. The inflammation only worsened until, at the age of two, she was diagnosed with dust mite allergy. Richard and Nikki rid the house of carpet and rugs and by the time she turned three, in the summer of 2013, the incessant and painful scratching had subsided.

Then, in October, the lively little girl grew unusually lethargic, sleeping for hours after pre-school.

“She had flu-like symptoms,” recalls Nikki, 42. “She would come home from school and crash out in the afternoon. So we took her to the GP. They took one look at her and said she was very pale. They sent us to the hospital for blood tests. We got a call that evening saying that her haemoglobin levels were very low, 40. Normally it is between 110 and 120.

“She was in quite a bad way, her heart was pumping hard. We were very concerned. No-one knew what was going on or why it was happening.”

Haemoglobin is the protein molecule in red blood cells that carries oxygen from the lungs to the body's tissues and returns carbon dioxide from the tissues back to the lungs.

She received a blood transfusion at the Great Western Hospital and immediately perked up. Her haemoglobin levels rose to 90 and she was diagnosed with transient erythroblastopenia of childhood, a slowly developing anaemia.

Doctors assured her parents she would recover fully.

And yet despite their optimism, Lillie never truly returned to her bubbly self.

“In our mind she wasn’t doing brilliantly,” admits Richard, who works as a computer programmer. “She was tired a lot. We could see a difference in her but the haemoglobin levels were in the 90s, and they kept telling us she would get better.”

Her parents now believe her itchy skin as an infant and blood condition could be connected.

In May 2014 she came down with tonsillitis and became violently sick. She was referred once more to John Radcliffe Hospital for blood tests. They revealed her haemoglobin levels had dipped, this time to 57. She was booked in for another blood transfusion on July 23. The vomiting stopped immediately.

Ever since she had had to return to the hospital for transfusions, each lasting four hours, every seven weeks.

Every transfusion immediately halts any sickness but like clockwork after three weeks the vomiting returns.

“It has been absolute hell,” says Nikki. “They kept doing additional blood tests for rarer conditions. Her blood transfusion lasted about five weeks. After about three weeks she started being sick again. Now her blood lasts about seven weeks before she needs another transfusion and the vomiting stops. In reality what this means is that she is sicker for longer.”

Richard adds: “It took a few months to convince doctors of the pattern. They didn’t think it was related. After a transfusion she is full of energy, mischievous. She is herself again. When she starts being sick she get tired and tearful. It’s hard.

“Not knowing exactly what is wrong with her is the worst thing.

“If we knew what it was, we could start learning how to manage it and cope with it.”

Doctors have now ruled out leukaemia. A panel of consultants including a neurologist and immunologist has now been called in to cross-reference symptoms and get to the bottom of her illness.

Lillie was briefly prescribed anti-sickness medication usually taken by chemotherapy patients but so far nothing has given her any comfort.

As she grows older, Lillie is becoming more aware of her situation and frustrated with the regular hospital appointments.

“We are taking it each day as it comes,” adds Nikki. “She is a strong, brave little girl and she doesn’t remember any different.

“But it’s been most of her life now. We don’t know what we are looking for. If she had a firm diagnosis and there was a treatment it would be slightly easier to comprehend and deal with. We’ve got to a point where we see she is going downhill but there’s nothing we can do. It gets worse after every transfusion.

“We have our bad days where we think ‘This is terrible, how can we carry on?’ Our life revolves around her illness and it is difficult for her sister Katie. You’re always waiting for the next thing to happen. But you have to keep positive and normal for the children. We react to what happens when it does so we don’t get to dwell on anything. That’s probably the best way to go about it.”

Finding himself relying on the kindness of strangers for his daughter’s treatment prompted Richard to sign up as a blood donor himself.

“Where the blood came from when she started getting transfusions never entered our mind,” admits Richard. “We are lucky, Lillie doesn’t have a rare blood type. But it’s a comfort to know that there are people willing to give blood to help people like her. It makes you more aware of the need to give blood.”

Watching as her daughter reverts briefly to her bouncy, slightly naughty self after each transfusion has been a tremendous comfort for Nikki.

“It gives her her life back. She is herself, full of energy. It’s a joy to see. It makes such a difference. That’s the positive side for me. She is my happy daughter again.”

FACTFILE

•  Donated blood is a lifeline for many people needing long-term treatments, not just in emergencies. The blood’s main components - red cells, plasma and platelets - are vital for many different uses. Yet only 4% of us give blood.
•   Maintaining a regular supply of blood to all the people who need it is not easy. Blood components have a short shelf life and predicting demand can de difficult. By giving blood, every donor is contributing to a nationwide challenge to provide life-saving products whenever and wherever they are needed. Red cells last up to 35 days, plasma up to one year and platelets up to seven days.
•   Most people can give blood. As long as they are fit and healthy, weigh over 7 st 12 lbs (50kg) and are aged between 17 and 66 (up to 70 if they have given blood before).

•  Male donors can give blood every 12 weeks. That's approximately every three months or four times in a 12-month period. Female donors can give every 16 weeks or approximately every four months.

•   To find out if you are eligible to give blood and for advice call NHS Blood and Transplant on 0300 1232323 or visit www.blood.co.uk.