The Haddows are waiting for a call that will hopefully transform the life of young daughter and sister Aleesha.
The 11-year-old was born with a condition called extrahepatic biliary atresia. For many people the unpronounceable name could almost conveys its seriousness.
Sitting in the Haddows’ Aughnaskerry living room last Thursday, the medical term spills off Christina’s lips with the casual expertise common of most mothers of seriously ill children.
“There’s no awareness of it,” Christina correctly says of the condition, which can’t be detected during pregnancy.
It only affects one in every 18,000 children. According to Christina, who is married to Lawrence, it’s not a hereditary condition and there’s no known cause for it. And beyond a liver transplant, there’s no known cure.
Aleesha politely sits on the sofa without a whisper or even a fidget as her mother discusses at length the condition which has defined much of her short life. The yellow hue of Aleesha’s skin flags the urgency of the need. Her liver is gradually failing. Her boisterous two-year- old sister Lola, out of concern touches the plaster on the back of Aleesha’s hand covering the point where an IV tube earlier fed an antibiotic in an attempt to quell an infection immediately prior to the interview – one of the litany of appointments in Cavan General and Crumlin. The Haddows first became aware of Aleesha’s illness within weeks of her January 14 2006 birth.
“My parents said, she was about five weeks old at the time, that they thought she was kind of jaundiced then and there was a slight tinge to the corner of her eyes – a greeny colour,” recalls Christina who, along with Lawrence, has four daughters in total, with Terese (15) and Eliza (12) making up the family.
A succession of blood tests and a biopsy revealed biliary atresia which Christina explains, means that the liver’s bile ducts weren’t draining the bile from her body.
“As often as she was being bottle fed, what was going into her was coming back out in the nappy,” says Christina. “She wasn’t getting any goodness out of any bottles, plus she started losing weights.”
Still only six weeks old, on March 1 of that year surgeons in Crumlin performed the ‘Kasai procedure’. Named after the Japanese surgeon who invented the technique, it involves removal of the gall bladder and, using the area of the liver from which bile should drain and attaching part of the small intestine to the exposed liver surface, allowing bile to drain.
“When they do the Kasai, some children can get weeks out of it, some can get months, or some can get years, it just depends,” explains Christina.
In Aleesha’s case it proved successful, and she was gradually weaned off medications. Check-ups in Crumlin eventually were scaled back to just once a year.
But after a decade of having the biliary atresia under control, the first sign that anything was awry came last May when it emerged that her blood results “were a little bit off”.
The bacterial infection cholangitis is a complication common after Kasai or liver transplant.
“It usually takes two weeks of IV antibiotics to clear the infection,” says Christina.
From mid-November Aleesha received a series of courses of IV antibiotics to tackle the worsening jaundice. Discharged on December 23, the family had an appointment in Crumlin on February 5 to see if the treatment had been effective.
“Every time she got the bloods done they were showing she was in more trouble, she was getting more and more jaundiced,” said Christina.
Doctors sought another liver biopsy to clarify the child’s condition. MRI , Ultrasound, CAT scan and HIDA Scan eventually confirmed she had a blockage in the liver. “When she got the HIDA scan – it’s a radioactive dye – it was able to go into her liver but it wasn’t able to leave her liver.”
Christina expands: “The liver is still working, but at a very slow pace. They can’t go in to unblock anything else, because the blockage is in the wee threads and veins deep in the liver… So the only alternative is – they have listed her for transplant.
Did you always know this day was going to come? “Some people have gone into their 20s, even 30s and 40s still with their own, as they call it, native liver with the Kasai. You might never have to get the transplant, and she had been doing so good for a number of years, and Dr Walsh in Crumlin would say about her: ‘She amazes me for a little one who was so sick, how well she has done’. But now in less than 12 months, everything has taken a turn around.”
Since no Irish hospital carries out liver transplants in minors, in late March Aleesha and her mum attended King’s Hospital in London for a transplant assessment. Now all there is to do is wait for a call confirming that a suitable donor liver has become available and the Air Ambulance will whisk Aleesha across the Irish Sea.
“The only thing they can do is try to keep it under control. Obviously the longer it goes, the more it scars, and the more it scars the sicker the liver gets.”
She’s still coming to terms with the thought that her daughter will have to undergo such a major operation.
“It was a shock because, I did think it’s not going to happen – it’s an infection somewhere that will be cleared up and she will be fine and we’ll say to ourselves six months down the line, ‘Do you remember all the hospital admissions, but now you’re okay’. But unfortunately not – it took a while to sink in: the only alternative is she needs the transplant.
Time crawls for Aleesha. Aside from her daily trip to Cavan General for antibiotics there’s not much to do. Fear of contracting infections has seen her no longer able to attend Corlurgan National School; home tuition after Easter will come as a relief for the family. Before she took ill, swimming and playing with her Yorkshire Terrier Max and a little bit of football filled her days.
“Seeing my friends,” she replies when asked what she most misses.
“She keeps in touch with them through Skype and Snapchat,” says Christina, “but it’s not the same… everything is at standstill at the minute.”
Another side affect from the illness which Aleesha has to deal with is an itching.
“Her blood would be very rich and she would be constantly scratching her arms and legs,” explains Christina.
Aleesha’ also conscious of her jaundice.
“She doesn’t go out, it’s other kids – a lot are asking her questions colour wise and eye wise, and things like that. She passes no remarks on that now.”
Christina shows commendable understanding to other people’s reactions to her daughter.
“If I bring her into Dunnes, you see other kids peeping around the corner, they don’t know any different, only they see she is a different colour from they are.
“But she’ll get back to herself when she gets fixed. That’s all she wants, isn’t it?
“Um-hmm,” an upbeat Aleesha agrees.
The prospect of that phonecall to fix everything constantly occupies her mum’s thoughts.
“We could get a phonecall at any time – could be tomorrow, could be six months down the line. She is an O blood type, which is common enough, and there will be kids who are sicker before her. It’s whoever is sickest, being a proper match, will get the call.”
Coincidentally when the Celt visits the Haddows, it’s Donor Awareness Week. Christina,who has had a donor card since she was a teenager, is eager to stress the importance of becoming an organ donor.
“I think there needs to be more awareness, because for a lot of people – unless they have a child belonging to them in some way, who is in need of an organ, it only brings it to mind then.”
Christine’s sister Beatrice Sweeney and her eldest daughter Terese Haddow have started a GoFundIt web campaign to raise as much funds as possible, as no one knows how long Aleesha may be in recovery.
“Everything depends on the child and how they do afterwards. Because you are coming from overseas, they have to be 100% that the child is fit to go back to Crumlin.”
Christine fears they could amass serious debt without help. HSE cover the costs of the medications and the cost of flights for one adult and one child, but it takes time for that to come through. While the Air Ambulance will try to accommodate one or both parents, children take priority and there is no guarantee that there will be room, and they may have to get expensive last minute flights. If in King’s it transpires that the donated liver isn’t a match, the family’s on their own.
“You have to find your own flights back to Dublin, and then the chances are you could come back today or tomorrow and then a day after that get a call again.”
The operation will see the surgeons go back in through the a long white scar from the Kasai operation which stretches across Aleesha’s midriff. The Celt notes that Aleesha been through a lot in her young life.
“She’s a fighter, aren’t you?”
Christina is focusing on Aleesha’s youth, which the doctors say “stands to her” and is hopeful she will have a “total lease of life after it”.
“At the minute it’s scary,” concedes Christina, pausing to think. “But it’s also exciting. It’s scary when you get the call and think this is it and we’ve got to go.
“We’ll not be negative about it: we’re going to say when we get the call we’ll say, ‘This is it!’”
She adds: “The way I look at it – as hard as it will be for the first few weeks, but after that – anything to get her back to herself and make her well again. It will be exciting that way – because we’ll be able to say, this darkness is behind us now.”
To make a donation online, see: www.gofundme.com/aleeshas-transplant