Shauna Davison, a British teenager, received an exciting athletes in 2012 with a hope to expand her life. But he died after two weeks.
His mother says that he was informed before two patients were attacking the same work, but he says they did not mention other people who died.
Replace it yourself cell cells and Karen Davison, Shauna's mother, thought he was Suffering this experimental technology.
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Shauna born with lungs, open knit and bad bad heart.
But despite being & # 39; spending her life in and out of hospital, she was a child very happy.
"Her illness was never tough, everyone was laughing at her," said her mother.
When he was 12 weeks old, the doctors saw he had difficulties with his / her course. He was too narrow and when he got caught, I can not breathe.
He got 48 hours of life.
Leeds surgeon, in England, came to rescues.
Dr David Crabbe warned that work could not work, but He was rebuilt on the track of Shauna using his own rivers.
The little girl had to be in hospital for six months. They sorted the trail cycle type to keep it open.
Over the years, and how Shauna's body grew, the doctors needed to delay the rings to make them larger.
For this there was a need to take tracheotomy, open in the mouth of the neck to help him to breathe.
"There were times when we thought it would not live," and remember Davison.
She had to learn how to change the tracheotomy tube to her daughter, how the air worked, a physiological exercises that helped her to develop breath the face, revival and unusual antibiotics.
"I did all her for her," she said. "And Shauna moved to her beautifully, but she did not know another way of life either."
Over the years He had to do it with many jobs, but he was constantly getting on. There were long seasons where I did not have to turn to hospital.
But there was a point where Dr. Crabbe's cure was designed for Shauna that was not enough.
The airport was too small and they needed to look for other options.
When I was 15 years old Suffering anguish.
Professor Martin Elliott, lannial surgeon and former medical director of Great Ormond Street Hospital in London, told the family about an initial surgery.
"They said that some research was carried out on trachea repeats and in two cases where the results were achieved, they were successful, but could not talk to them as a result of the patient's confidentiality," a & # 39; remembers Davison.
One of them was a 10 year old boy, he says.
"Shauna was the same opportunity," the mother laments her.
The transference was, of course, uncommon.
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First he needed it get a subscriber trailer and then it would have been decorated with tools from its own cell cells, which would cause your body to go to it; Feel that your own is your own.
I did not need medicine for refusing to stop, there was always an impact in transplants.
It was a very innovative way of using new technology of cell and still in the experimental level.
In the United Kingdom, that legislation establishes that Doctors can visit experimental remedies if the patient has a terminal illness and there is no other treatment. It is called "awesome use".
The medical team told her mother that the youngster would not need dracheatomy or no ventilation and that she would normal life management.
They also tell him about the possible dangers: he could deny the repetition and the normal dangers in general anesthetic.
She followed her treatment at Great Ormond Street hospital and had a range of specialists in charge of her case.
She told her what she was hoping to do for the future, the young woman said she wanted to be able to swim.
It was not easy to decide; to include a & # 39; submit into operation, says Dr Martin Wallis.
"There was enough to lose and the decision was not easy," it appears.
"She had a reasonable quality of life, a good friend, wellbeing and knew how he would have fun, and that made everything more difficult."
"I wanted to work long while it was fine, not wait to have a bad feeling and then be able to do it," Davison a & # 39; mean.
The medical team spoke to the hospitals committee of the hospitals the likelihood of the success of the work.
"They can not prove when my daughter could die, but that she would be in the future not far away his flights were delivered. Tell me then about how they were willing to do that, "said their mother.
"Like any other father, if you think that your child can help you to live, I took it".
In February 2012, Shauna received a trachea from a donor who was covered by her own cell cells.
At first, everything seemed to be going well.
"During the first two days it was good," a & # 39; remembers her mother. "I can not believe how well he got back after work."
But two weeks later she had to be carried by an ambulance from the same hospital in London to one in Leeds, in the north of the country.
During the trip, the girl often began to casualties and she had to be swept away from her neck by going to her; soup.
"It was weird, but we thought it was the result of the trip," said the mother. "I thought: & # 39; An additional week or two and we're home."
But the next morning, the health of Shauna's health became worse.
"His coffin was to be blocked," said Davison, who still has a " remembers his daughter saying, "Help me, help me."
"This is the worst day of my life because I can not help her."
Shauna's new track has stopped working.
"They said she hardly tried to breathe, her heart ended her crashing, she was an amazing girl, I miss him so much."
When its first re-design was carried out in 2008 with a track delivered which was covered by the cells of the patient, he made media press releases all over the world.
It was thought Remove remedies from the surface of the trace and place it with cell cells Breathe as to & # 39; Create a new organ with the patient's device.
No medication needed to prevent her body offset; the attack of the new organics.
Paolo Macchiarini was the lawyer who was responsible for The first work was done with the help of Martin Birchall, then a surgeon at Bristol University.
Claudia Castillo, a 30-year-old woman; wear that affected its bronze.
His case appeared in the renowned celebrity The Lancet. Five months after the intervention, it was reported that he was in good health.
"It was seen as reasonably, truly innovative … and opened the door to new and promising technology that used a combination of cells and artificial elements and # 39; creating a new hope in the field of revitalization medicine, "and reminding Professor John Rasko, president of the International Society for cure medicine.
He had smell PNobel Prize "says.
Indeed, the university hosted the Nobel Prize for Medicine, the prestigious Karolinska Institute in Stockholm, a situation for Maccini's.
Birchall, on the other hand, went to the University of London College (UCL), where Macchiarini was also nominated as an honorary professor.
there were other success stories They also stayed in their papers, Queries about these replications of transmitted discharges by cellulose from the recipient
Macchiarini fell out of favor after he was using plastic tracheas (instead of those given) and covered by cells.
The results were tough: patients died.
Macchiarini was investigated several times with the Karolinska Institute before being burned. The objections were initially dismissed, but after that the institution was considered guilty of scientific misconduct and many of its articles were removed from scientific magazines.
The Swedish prosecutors opened again investigating serious crime against December last year. The allegations have always been rejected.
The University College Hospital (UCL), where Birchall worked, was Macchiarini's disciple, clinical rehabilitation of tracheas and larvae that was revamped by cells, called Inspire and RegenVox respectively, According to reports, queried whether the cure "played a therapeutic role" in the operation of one of his patients, Ciaran Finn-Lynch, was the successful 10-year-old boy named to the mother of Shauna.
Martin Birchall was the chief inspector responsible for his / her guide those essays. He and his millions of pounds to university would invest in research funding.
UCL made a new report on renewable medicine. In 2017, it published specific research results, created after the Macchiarini publications, which had no problem in Birchill cures, so The door opened for future clinical trials.
But the family of Shauna Davison I was not aware of the doubts that had arisen about the innovative cure given to him as the only option to save his daughter.
They told him about the two well-done cases, there at Ciaran Finn-Lynch and there Claudia Castillo.
But they were not told that the reconstruction of Castillo's tragedy was more difficult than three weeks after receiving it and that he needed to keep it open. Since then he had to remove lungs.
They did not know the majority of the other issues that were spoken about Martin Birchall in 2010.
One of them is Keziah Shorten, a three-year-old back-to-date driver of Macchiarini who has been diagnosed with a rare cancer.
Displaced her after a year after her work.
Martin Birchall told a Swedish documentary program in 2016 that the trache was broken. When he was subsequently run in a hospital at the University of London, they replaced a plastic space instead. He died a month before the work of Shauna.
According to Iain Rasko, "The obligation to provide a complete and honest account of all available information. Poor casualties are completely incompatible. "
Speaker for the Great Ormond Street hospital for the BBC said: "As a patient, the situation of Keziah and his badly different from Shauna, so he was not always relevant to talk about his case."
The hospital said that the other patients were not named "because the team did not know other relevant issues abroad at this time."
But Karen and Shaun did not know more well.
They heard about Ciaran Finn-Lynch, but there were important differences between his work and that's Shauna.
Ciaran got one of the rings for the trachea. Shauna, gun.
According to the UCL 2017 research report, Dr Martin Elliott said he wanted to use it, but was told not to use it.
Ciaran also received a new trache from a contributors. Shauna was frozen and then destroyed.
there was cure that was not previously used.
Trish Murray, a professor of renewable cell and cell biology at Liverpool University, England, is very important to the events in the Shauna case.
"That is true If you do not have a ring for the tracheaIt can fall. That's all the knowledge, not just the patient's replacement of a trace, "he said.
"So, though they are known to cause problems, unless one of these rings is used, the trap will come down and the patient will be drowned."
Another problem is to use a I drink frozen.
He made a lot of feeling that the crew would frost the organ that was donated, and so did it; It could be stored and troublesome when needed.
Trish Murray also criticizes her & her; this decision.
"Ciaran's succession was unsuccessful in advance, and Shauna did and we know from the documents of the team over the case They knew that the pipe was weak… to make collapse more likely after removal, "he said.
UCL will investigate the relevance of these surveys and it is told to the BBC that these reports do not; describes the method used by the young ones who died.
Murray says there are many Other surveys should be blowing the warriors. And besides that, it also asks about the place where cans can be played.
"Verily, there is no evidence that any of these cells live, indeed there is enough evidence," Murray is defending.
But how doctors and scientists who are involved in the ability to do? Caring for patients with poor illness to use those tracheas when there was little evidence that they were working really?
In general, researchers need to try their innovative treatment in the laboratory and then in animals in prehistoric research. Just then, with formal agreement of a research committee and governors, and start with trials with people.
But there is a legal place that covers these issues. These are called tricky searches.
Martin Birchall wrote there The Lancet the "abusive checks", the method of using new medicines in patients who are very ill, "accelerate the test of new cures".
"The surgeons used this obvious bent in tirelessness to try to get patients and then used the data obtained to go to the governing authorities and so they got permission to continue with the tests, "said Trish Murray.
John Rasko agrees with Trish Murray this is not the way the system should work.
"The choice of pollution use is of great concern and should not be used as a means of using medicines doctors that do not routinely surrender to medical regulations," said Rasko.
And Great Ormond Street hospital also agrees. "We do not see encouraging use as a means of trying to treat new cures," said a spokesperson. The BBC.
However, the replacement of Shauna and some other patients was used to obtain funding and to agree to conduct clinical trials.
It was also written about it in medical magazines and in a request for the European Medicines Association.
The BBC got that at least seven of these documents and publications will be poorly represented on the treatment or death of Shauna in some way.
For example, in a bid in 2016 for the European Medicines Agency, Martin Birchall says that the surgeon at Shauna was successful, but it suffered a complicated, deadly, six-week, problematic and realistic problem He died after two weeks because his career stopped.
At the time the public bodies agreed it and funded the clinical trial to perform a trachea repeat test by machine engineering, a change was made in the & # 39; process.
After informing Shauna's experiences, the team needed to ensure that patients who participated in the # 39; a ring using a lawsuit for the trachea.
But even after that, there were misleading information about Shauna and about Claudia Castillo in the patient information leaflets under these tests.
Ciaran Finn-Lynch had only his case and case on the information page, despite the fact that the team had known 10 other cases of trachea-repeat applications that were used worldwide.
It's not until 2014; Martin Elliott announced that 10 patients had trachea acquired by knitting engineering and that they were all but Claudia and Ciaran had died.
Last year, clinical trials were suspended and an UCL He says he has not recruited anyone to take part in exams of this kind.
Lack of information
Much of what the BBC has discovered about what happened to Shauna does not appear in a special UCL research report.
Leonid Schneider is a renowned journalist biologist cellular biologist who has had a renewable cure covering 2016.
It was asked to give evidence in the UCL study framework and to build some of the contents; worries that concern the case.
"Why Shauna's mother did not have the full information? And who did not expect her to put a ring?" She wants.
"And how did UCL researchers be able to initiate the proxy's clinical trials of the proxy after Professor Delaere and tell them how many people died from this disease? "
UCL itself defends: "All searches carried out in the UCL meet the highest levels legal, ethical and governance; and we do not have to take the necessary steps, if this has not been achieved ".
After receiving a behavioral advice, the BBC told Karen to find her about machine engineering re-installations.
He got angry. He said that information to be changed to a decision on the role of Shauna.
"I hope nobody else needs to go through what I've been doing, I hope that's going to be. They need to be stopped. This is a swept. People ask me: "How did Shauna die?", And I always say, heart attack. I did not always blame those surgeons for his death. Many have to answer"
The hospital said the surgery was done: "Before the work of Shauna was done, the medical and medical tests examined were thoroughly examined."
They said: "We are sorry that the cure did not work for Shauna and that the family felt they did not get all the relevant information. We want to meet them so they can talk about something Anyone who worries them. "
"It's been taken all this time, when someone thinks they would have called me a phone and that they would have said something long," Karen Davison's complaint.
"I know she would never have been, but at least I could have been given her a bit."
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