Category Archives: Liver

Aleesha set for liver transplant – Anglo Celt

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Sunday, 16th April, 2017 7:08pm

Aleesha set for liver transplant

Aleesha set for liver transplant

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.”

Fund raising

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.”  

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Prayer & Patience Help Girl Survive Liver Transplant – CBS Miami

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MIAMI (CBSMiami) – If you could put a face to bravery, 11-year-old Victoria Rojas would be it.

“With everything I’ve gone through, like this transplant, I was so excited to get the transplant because,” Rojas said before tears welled up in her eyes. “I feel good, it’s just different with this transition from liver disease failure and the actual transplant.”

Exactly one year ago she was a typical 10-year-old, about to finish up the 4th grade, when her mother noticed her skin was looking a little yellow. She took her to the doctor on a Tuesday to get her checked out.

“And then on Friday the doctor called me and said we got the results so you have to go to the hospital to admit her to do more test,” recalled Rojas’ mother Mary Ann.

Victoria was eventually diagnosed with autoimmune hepatitis type 1 liver disease. The chronic disease causes the body’s immune system to attack the liver and cause it to become inflamed, often leading to liver failure.

Her doctors said Victoria’s liver was so bad it was equivalent to that of a person who had been drinking their whole life and she would need a transplant immediately.

The Clearwater family was told she’d receive the best care at Jackson Memorial’s Transplant Institute.

What made the situation even harder for Victoria was that her dad, a military contractor, was overseas when all of this was happening.

“I hated it, I felt very unhelpful, useless, being so far away,” said Victoria’s father Jenaro.

Victoria received word that she had a match just seven days after her father returned home. She underwent lifesaving surgery which was described by her doctor as uneventful.

CBS4’s Tiani Jones asked the 11-year-old how she got through such a tough year.

“Prayer. I also remembered that I would get through it,” she said.

The road to recovery will be a slow one, but the family is grateful that Victoria will be able to return to school, play sports, and have a normal childhood again.

“Victoria is smiling more, walks more, is ecstatic, and is eating more,” says Mary Ann. “She is no longer on pain medication and she is stronger than ever.”

As Victoria recovers, her father feels grateful that he could be by her side during her recovery. In just a few weeks, he is scheduled to once again be deployed for another 10-month stint overseas. He can go now in peace, he says, knowing that his daughter’s health is improving.

Offaly boy undergoing long-awaited liver transplant today – Offaly Express

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Offaly schoolboy, Charlie Lynch, has secured the long-awaited transplant he needs to save his life. His mother, Helen Lynch, has previously told the Offaly Express about her son’s condition, which he has suffered with from birth, and the search for a donor which led her to make a heartfelt public appeal. 

SEE ALSO: Mother makes desperate donor appeal for dying Offaly boy

Charlie is now undergoing the transplant surgery this afternoon as a liver has been donated following the death of a man last night. 

Charlie is being treated in the UK having been moved by his mother from Tullamore. Helen Lynch this morning described her son as “the bravest little man” as she posted a picture of him “all ready for his transplant” to social media.

Helen’s decision to move to the UK was due to the fact that pediatric transplants are not carried out in Ireland and in order to be closer to King’s Hospital if and when a donor liver became available – a situation that has now arisen. 

The eight-year-old’s condition had been worrying his mother, who said she feared his time was running out. He has been waiting three years for a transplant, but is now finally undergoing the surgery today. 

If you have a story for us, sports news, an event happening in your area, or if you want to submit pictures or videos, contact the Offaly Express team via e-mail to, or through our Facebook.

Eudora girl organizes fundraiser for friend’s liver transplant – Lawrence Journal World

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Sam Beckner, of Eudora, fights back tears when talking about the fundraising campaign 11-year-old Rylee Griffin organized for her granddaughter Genevieve Kiene.

Her 3-year-old granddaughter has Alagille syndrome, a rare genetic disorder that has her on a liver transplant list, Beckner said. The disease, diagnosed when Genevieve was just months old, has led to a series of associated medical complications from the toddler’s inability to properly digest food and nutrients, including the calcium needed to strengthen bones.

Rylee Griffin, 11, of Eudora, points to the bracelets she is selling to raise money to help the family of 3-year-old Genevieve Kiene pay for an impending liver transplant. Rylee came up with the fundraising idea when she was inspired by how her young friend remained upbeat despite the problems she experiences from her rare genetic liver condition.

Rylee Griffin, 11, of Eudora, points to the bracelets she is selling to raise money to help the family of 3-year-old Genevieve Kiene pay for an impending liver transplant. Rylee came up with the fundraising idea when she was inspired by how her young friend remained upbeat despite the problems she experiences from her rare genetic liver condition.

Recently, Genevieve, the daughter of Amanda and Doug Kiene, of Lawrence, broke an arm when she tripped and fell.

“A year ago, she broke her leg and was in a body cast from the waist down for some time,” Beckner said. “Recently, she broke her arm when she tripped and fell. Through it all, that little girl has such great spirit. She draws people to her because of her sweet nature and spirit. She is such a strong little girl.”

Rylee was one of those captured by that spirit when she saw the toddler in her cast at a fitness class Genevieve’s mother Amanda Kiene teaches for Eudora Parks and Recreation.

“My mom goes to those classes, so I met her there,” she said. “She’s always upbeat and smiling even on a bad day. She was smiling when she had a broken arm. I felt bad for her, so I started raising money for her.”

Rylee’s idea was to sell bracelets with the inscription “Faith over Fear.”

“I had another bracelet fundraiser like that with softball, so I knew I could raise money for her,” she said.

Rylee’s mother, Rachelle Griffin, said they ordered 500 of the bracelets, which they are selling for $5. The money will be given to the Kienes to help with that part of Genevieve’s pending $577,000 transplant surgery the Kienes’ insurance won’t cover, she said.

Eudora Parks and Recreation with have a 5K run/walk fundraiser for Genevieve Kiene on April 29. Registration will start at 8:30 a.m. and the race will start at 9 in Eudora. For more information on the event, call 785-542-3434.

Rylee has already sold 265 bracelets, and her mother is confident she’ll have to order more to satisfy demand and her daughter’s sales abilities. Most of the bracelets thus far have been sold to friends, Griffin said. She and Rylee are now planning on mailing bracelets to those who order them by emailing More information on the fundraiser, Genevieve and Rylee can be found at the Facebook page Faith over Fear – Bracelet Fundraiser for Genevieve Kiene.

The fundraiser is much appreciated and its “Faith over Fear” message is most appropriate, Beckner said.

“The Bible says when we are in fear, we get in God’s way,” she said. “We really have to stay in faith for Genevieve.”

Contact Douglas County reporter Elvyn Jones

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Allexis Siebrecht, liver transplant recipient, hoping to raise money to go to international transplant games –

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Almost two years after receiving a life-saving liver transplant, 13-year-old Allexis Siebrecht is hoping to represent Manitoba at an international athletic competition for kids who have received organ transplants.

Allexis was born with biliary atresia, a rare liver disease that meant she needed a new liver at age 11.

Allexis Siebrecht at The Hospital for Sick Children in Toronto

Allexis Siebrecht, 11, spent a month recovering from a liver transplant at The hospital for Sick Children, or SickKids, in Toronto.

Before the transplant, the condition meant even things as simple as breathing were difficult for her, but not anymore, Allexis says.

“Before I had my transplant I felt, like, really tired, and I felt like I couldn’t walk up any stairs. I was getting sick a lot,” she said. “And now I’m just active and hyper and running and doing all these sports.”

Last year, she competed in the Canadian Transplant Games and brought home some serious hardware — nine medals in swimming, badminton, tennis and track and field. The wins also meant she qualified for this year’s World Transplant Games in Malaga, Spain, where she would be the only Manitoba competitor.

Now, the family is trying to raise the nearly $6,000 they need to get her there.

Connection to other families

The family has started a GoFundMe campaign to raise $5,675 — around half of the total cost of the trip for Allexis, her sister Jersey and mom Liz Siebrecht.

Liz said going to the Canadian version of the games meant a lot to their family. Allexis still keeps in touch with friends she made there.

“When I saw her compete in the Canadian Transplant Games in Toronto it was … nothing short of phenomenal. I was just, like, so in awe and just, ‘Wow, this is amazing,'” she said.

“It would just be such a great experience to experience it again,” Liz added. “When we went to the Canadian Transplant Games in Toronto, we felt a connection there with the other families who have been through the same things that we have went through as a family.”

Allexis Siebrecht, 11, says liver transplant lets her breathe, run and dance2:14

Allexis is already preparing for the tough competition. To stay in shape, she runs with her dog and swims three times a week, she said.

She says she’s excited for the joy of competition, but also the family time she’d spend at the games.

“It’s nice that you can take your family there, and the families can, like, cheer on the transplant recipients,” she said.

“I’m feeling, like, really, really energetic, and really good, and, like, really, really happy. And I’m looking really, really forward to competing.”

Dual live-donor transplant surgery conducted on 2-year-old – Times of India

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KOCHI: Grandmother donated her kidney and father donated his liver to save a two-year-old girl who weighed 7 kg, making her the smallest child in the world to have successfully undergone dual live-donor transplant.Doctors who performed the transplant at Aster Medcity said that the organ transplant manual states that a child should weigh at least 10kg for a transplant. Parvathy MS from Kodakara in Thrissur suffered from a rare congenital condition called primary hyperoxaluria type -1, in which the deficiency of a liver enzyme leads to abnormal spike in blood oxalate levels that permanently damage the kidneys.

“There is evidence of successful dual transplant being done on a child weighing 9 kg. But till date, no one has performed transplant on a child weighing 7 kg,” said Dr Mathew Jacob, consultant liver and abdominal multi-organ transplant surgeon, Aster Medcity.

However, the decision for transplant surgery was not immediate. “We wanted to wait till the child’s weight touched 10 kg. But when we realised that we would be risking her life if we waited, we discussed with the girl’s family and decided to go for transplant,” said Dr V Narayanan Unni, senior nephrologist, Aster Medcity.

Explaining their ordeal, Parvathy’s mother Saritha MS said that their daughter was first put on daily peritoneal dialysis when she was four months old. “The dialysis lasted for nearly 20 hours each day. After a year, she had to be put on ventilator and needed daily hemodialysis. But soon doctors said that transplant was the only option and they couldn’t wait longer,” said Saritha.

However, getting a donor, the baby’s size and age was not easy. Therefore, it was decided to take her grandmother’s kidney. But that had its own complications. While the adult kidney is nine and half to 11 cm, that of a child is 4 cm. Also almost half litre blood flows in the adult kidney in an hour, that’s the amount of blood flown in a child’s body. “The solution was to remove her damaged right kidney and place the new kidney. The blood volume in her kidney too had to be increased using highly specialised techniques,” added Dr Jacob.

“Post-transplant surgery in November 2016, the child was in the hospital for 51 days. She has recovered well and now weighs 10.4 kg,” said consultant paediatric intensivist Dr Rajappan Pillai.

Her grandmother, 53-yeear-old Sathi Raghavan added, “I told my son and daughter-in-law that I had to do this for my granddaughter. I am happy now as she able to move and breathe without much pain”.

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New Score Predicts Liver Cancer After Transplant – Medscape

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Four-year follow-up data from one of the largest single-institution datasets in the United States show that the Model of Recurrence After Liver Transplant (MORAL) score for hepatocellular carcinoma is highly predictive of recurrence-free survival and can accurately identify patients who should not undergo liver transplant with a living donor.

The simple test, which measures neutrophil-lymphocyte ratio (NLR), alpha-fetoprotein (AFP) level, and tumor size, was superior to the Milan criteria — the decades-old gold standard for assessing recurrence risk and transplant eligibility, says a research team led by Karim J. Halazun, MD, of the Division of Liver Transplantation and Hepatobiliary Surgery at Weill Cornell Medical College, New York City.

The MORAL score predicted recurrence both before transplant (pre-MORAL score) and after transplant (post-MORAL score), with c-statistics of 0.82 and 0.87, compared with 0.63 for the Milan criteria. A combination of the two scores produced a “combo-MORAL” score with a c-statistic of 0.91, the researchers report in the March issue of Annals of Surgery.

“The best utility for the transplant community is when we add this [MORAL score] to Milan,” Dr Halazun commented in an email to Medscape Medical News. He said that the the Milan criteria have made a “huge impact on the liver transplant landscape in the US and worldwide,” but pointed out that Milan criteria are based on radiologic findings, whereas the MORAL score objectively measures indices of tumor biology associated with risk for recurrence.

Patients with a high pre-MORAL score and tumors with aggressive biology should be excluded from transplant or given intensive therapy followed by observation “to either alter tumor biology or allow it to declare itself,” the researchers emphasize.

Conversely, a low pre-MORAL score is associated with a 5-year recurrence-free survival rate of almost 100%, effectively eliminating “the likelihood of tumor recurrence,” they say.

“The risk-stratified MORAL score provides the most accurate risk stratification model to date for tumor recurrence in patients with HCC [hepatocellular carcinoma] undergoing liver transplant,” the researchers say.

Although the MORAL score, as a stand-alone score, appears to be highly predictive of recurrence-free survival, when the researchers used it as an adjunct to the Milan criteria, they identified a subgroup of patients at higher risk for disease recurrence than had previously been thought.

“If validated by external groups, this score can act as an adjunct to the Milan criteria, allowing for a more objective identification of tumors with aggressive biology and aid in the selection and management of patients with HCC to undergo liver transplantation,” Dr Halazun and colleagues say.

The team is currently working with groups in the United Stats and Europe to validate their MORAL score, Dr Halazun told Medscape Medical News. “We should have these results within the next year or so.”

Study Details

For their analysis, the team analyzed follow-up data from 339 adults who underwent liver transplant for hepatocellular carcinoma at Columbia University Medical Center between January 2001 and December 2012. They found that patients with high or very-high MORAL scores fared just as poorly, irrespective of whether risk stratification fell inside or outside Milan criteria. For this group, the 5-year recurrence-free survival was less than 50%, the researchers report.

Conversely, patients with low-risk MORAL scores outside the Milan criteria (T3 tumors) did “extremely well,” with 5-year recurrence-free survival of almost 80%. “The addition of NLR and AFP to Milan may therefore allow us to identify higher risk patients for recurrence in what is traditionally perceived to be the lowest risk group,” they say.

The analysis also identified three independent preoperative predictors of worse recurrence-free survival: an NLR ≥ 5 (hazard ratio [HR], 6.2); AFP > 200 (HR, 3.8); and tumor size greater than 3 cm (HR, 3.2; all P < .0001).

Results show that the 5-year recurrence-free survival for patients with the highest pre-MORAL score (13 points for all three risk factors) was 17.9% compared to 98.6% for the group with the lowest pre-MORAL score (0 points with none of the risk factors; P < .0001).

The post-MORAL score was constructed using what the researchers observed to be four independent predictors of worse recurrence-free survival. These included grade 4 disease (HR, 5.6; P < .0001; ); vascular invasion (HR, 2.0; P = .019); tumor size greater than 3 cm (HR, 3.2; P < .0001,); and a score higher than 3 (HR, 1.8; P = .048).

“The post-MORAL score can aid in this process [of risk stratification] by again identifying very-high risk patients whose 5-year recurrence-free survival rate is 22%,” the researchers say. This rate is equivalent to that seen in patients with aggressive cholangiocarcinoma or pancreatic adenocarcinoma after surgery, they add.

Patients can be given a more precise long-term prognosis, and the post-MORAL score can also be used to identify high-risk groups for targeted adjuvant therapies following orthotopic liver transplant, the researchers say. “Such therapies are not routinely used post transplant for HCC [hepatocellular carcinoma], even in the highest risk patients,” they point out.

Combining AFP and tumor size with NLR has “vastly improved” the utility of the biomarker, Dr Halazun said, noting that other groups have since modified the MORAL score using variables such as PIVKA, a marker of subclinical vitamin K deficiency.

Still, the researchers are standing behind their MORAL score, which they say is the only one to use the NLR. “We believe our original score including the NLR provides a more useful risk stratification of patients with HCC and has a broader application to recipients of any type of grafts.”

When Medscape Medical News asked whether the older Milan criteria, which are based on radiologic findings, should be replaced with an objective measure of tumor biology, such as the MORAL score, Dr Halazun answered: “I don’t believe that these criteria should be entirely replaced…. Instead, my feeling, based on our research and that of others, is that adjuncts to the Milan criteria that move us away from simple size and number indices and provide true reflections of tumor biology are required, and MORAL may represent as one of these adjuncts.”

Other scores are highly predictive of recurrence, Dr Halazun acknowledged. But whether it’s MORAL, PIVKA II, or some other index of tumor biology, more accurate measures of tumor biology are needed to better stratify risk when selecting patients with hepatocelluar carcinoma for liver transplant, he said. “It’s clear that continued research in the area is required.”

Although the researchers did not include patient survival in their analysis, tumor recurrence is associated with poor prognosis, Dr Halazun noted. “We believe that recurrence of hepatocellular carcinoma after liver transplantation constitutes failure, as organs to transplant these patients are scarce. As such, eliminating recurrence will greatly improve survival.”

The authors have disclosed no relevant financial relationships.

Ann Surg. 2017;265:557-564. Abstract

Follow Medscape Oncology on Twitter for more cancer news: @MedscapeOnc

5th-grader with liver transplant pushes for healthy living at her school – KABC-TV

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Macey O’Kelley, a fifth-grader at Melrose Elementary, leads her school as a healthy example despite having once faced a life-threatening liver condition.As a baby, she suffered from biliary atresia, a condition that causes organ failure due to the lack of bile duct openings in the liver.

O’Kelley underwent a liver transplant and has since shifted her attention to the well-being of her classmates.The 10-year-old has become an ambassador with the Greater Los Angeles division of the American Liver Foundation.

“We’re seeing such a spike in the numbers of fatty liver disease being diagnosed in children and it goes with the rising obesity rates in this country,” Dana Waldrop, of the American Liver Foundation, said.

Her family teamed up with the school’s parent-teacher organization to put together a student jog-a-thon and fitness expo.

“We just wanted the kids to be exposed to different forms of exercise so they could pursue a lifestyle that was healthy,” parent Simone James said.

Being overweight and having fatty liver disease has been linked to cirrhosis and liver cancer.”I think a lot of people don’t even know where their liver is” Waldrop said. “If you ask people, ‘Where’s your liver?’ they don’t know. It’s our third largest organ, but people don’t really understand how important it is to the body.”

O’Kelley is grateful that she has been able to get the chance to live a long and healthy life. For her family, her life has been a victory.

“We’re so grateful to reach this day and to have her be out here, able to run,” her father, Brian O’Kelley, said. “It’s such a privilege, it’s just great.”

(Copyright ©2017 KABC-TV. All Rights Reserved.)

Alberta baby waiting on liver transplant from mother –

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Jacob Kohlruss’s uneven baby teeth protrude from his constant ear-to-ear grin.

Looking at the 14-month-old, it’s hard to believe he’s fighting cancer — for a second time.

There’s an inoperable tumour in the little boy’s liver. His only option is a transplant, and early tests are showing his mother, Courtney Kohlruss, is a near-perfect match.

‘I wanted it to be me as soon as I knew liver transplant was possible for him.’ – Courtney Kohlruss

“I wanted it to be me as soon as I knew liver transplant was possible for him,” Courtney said Sunday in the sunny living room of the family’s Leduc house.

“For a mother to be able to give a second opportunity to give life to their child is something really special.”

Courtney and Jeff Kohlruss, both 28 years old, were married on Jan. 31, 2015. Since the birth of their son on Nov. 4, 2015, they spend their time together at home when they’re not at the Stollery Children’s Hospital because his immunity is so low.   

Cancer diagnosis ‘indescribable’

Jacob has a rare genetic condition called Simpson-Golabi-Behmel Syndrome. There’s not a lot of information on it and only a few hundred cases have ever been diagnosed. The most prevalent complication is gigantism, which can mean overgrown organs and an increased risk of certain childhood cancers.

When Jacob was only eight weeks old, doctors found a tumour in his liver.

“It’s every parent’s worst nightmare to hear something like that,” Courtney said. “To get a cancer diagnosis for a baby is something that’s indescribable.”

At five months old, Jacob had surgery to remove the tumour and underwent chemotherapy. In July 2016, he was declared in remission.

Jacob Kohlruss surgery

Jacob Kohlruss is pictured after undergoing surgery for a liver tumour when he was just five months old. (Roberta Bell/CBC)

Just days before he turned one year old, doctors discovered another tumour, one that intertwined with his liver vessels.

The little boy’s only option was a transplant and he was eligible for a living donor.  

Both his mother and father immediately got tested to see if they were candidates. Both were matches, but since Courtney is so slender, it’s more likely a piece of her organ will fit Jacob’s small body.

No guarantees 

Before the surgery proceeds, Jacob still has to go through more testing.

“There’s still a lot of variables that could change the way that this is going to go,” Courtney said.

“Nothing’s a for-sure until we’re both in the operating room and they say that everything’s a go.”

Tentatively, Jacob could receive the transplant in March.

“It’s about staying as positive as possible in a bad situation,” Courtney said.

Jeff Jacob Kohlruss

Jeff Kohlruss has stepped away from his job as a pipefitter to spend more time with his son, Jacob Kohlruss, who has an inoperable liver tumour. (Roberta Bell/CBC)

Given her son’s health, she never returned to her retail job after her maternity leave. More recently, her husband also stepped away from working as a pipefitter.

“We wanted to wait and see how things were going to go and try to spend as much time as we could as a family,” Courtney said.

“We both believe that Jacob will beat this and be OK … the best thing that we can do for him is be happy and be supportive and continue to believe that in years he’ll be able to look back on this and see what he survived.

“I want him to grow up and to know how strong and how brave he was and beat this and be able to move on and have a normal childhood.”


Rare transplant gives 3-yr-old a shot at life – Mumbai Mirror

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Rare transplant gives 3-yr-old a shot at life

Dr Anurag Shrimal (L) and Dr Lalit Kumar Verma with Shubham and parents Ajay and Shital Gurav

Relentless efforts of city doctors helped save Shubham Gurav from a life-threatening liver condition.Shubham Gurav is chatting merrily with his parents at the Mira Road unit of Wockhardt Hospitals. The 3-year-old has made a rapid recovery after being operated on for a life-threating condition.

“Shubham’s was a very rare case – he had a urea cycle defect and cirrhosis of the liver,” said Dr Anurag Shrimal, consultant, abdominal organ transplantation and hepato-pancreato-biliary surgery. Sufferers of liver disease – when left untreated – do not survive past their fifth year, said Shrimal. “But, with a liver transplant, most continue to thrive and live long, full lives.” How quickly the condition is detected makes all the difference.

“It’s an inborn error of the metabolism, and in 90 paediatric liver transplant cases that I came across while training at the University of Alberta, only two children had this condition, so it’s very rare. We also found that, by the age of one, kids with similar conditions had severe intellectual incapacity, or they had generalised gross delay – in this case, it was very subtle,” said Dr Lalit Kumar Verma, consultant paediatric – gastroenterology and hepatology.

Shubham was lucky because, as his 28-year-old mother Shital said, “We didn’t suspect anything because he was an energetic child. The only reason we went to a doctor was because Shubham could not hold any food down.” When the family met Dr Verma in May 2016, Shubham weighed a mere 7.8 kg.

“On Day One of his clinical assessment, I found he had a firm liver and an increase in abdominal girth or distension (fluid in the belly),” Dr Verma said. A subsequent blood test confirmed the doctor’s worst fears, and thus began a massive project that involved a lot of teamwork between Wockhardt doctors and a lot of legwork for the parents who had to apply to various trusts to get the funds together for a surgery which, it was estimated, would cost them Rs 16-17 lakhs. Funds for the surgery were sanctioned by the CM’s Relief Fund, the PM’s Relief Fund, and Salman Khan’s Being Human Foundation, but it was only when the Sir Ratan Tata Trust came through with the largest chunk of the payment that the family could breathe a sigh of relief.

“We started working on multiple things at the same time. Our paediatric cardiologist ruled out congenital heart defects; Dr Lalit started working with a nutritionist to optimise Shubham’s medical condition and Shubham also had to gain weight, as scientific studies have shown that for patients who weigh 10 kg, the outcome of the transplant is much better than for those under 10 kg,” said Dr Shrimal.

In the meantime, Shubham’s father, Ajay Gurav, a 35-year-old who works as a helper at an electrical works company, was also examined to see if he could donate a portion of his liver to his son.

Shubham was operated on from 7am to 6pm at Pune’s Sahyadri Hospital on December 12, and he is now well on his way to recovery. But, Dr Shrimal said, “The 30-day survival rate for such cases is 85 per cent; the 1-year survival rate is 80 per cent and by the fifth year, the survival rate comes down to 70 per cent.” Dr Verma adds that “the first patient I had transplanted in Canada (she was 10 months old then) is now 20, and she’s a basketball player.”