Alyssa Smith, now 21, was the first U.S. recipient of a living-donor liver transplant in 1989.

Today’s conference celebrating the 20th anniversary of the first pediatric living-donor liver transplant in the United States was many things: a history lesson, a technical discussion of surgical techniques, a reunion of dispersed colleagues, a media event. But most impressively, it was the rare medical conference that paid direct tribute to the reason everyone was there - the patients. Capping nearly 8 hours of presentations were brief remarks by Teri and Alyssa Smith, the mother-daughter/donor-recipient pair at the heart of that first procedure back in November 1989.

In their speeches, both Teri and Alyssa listed off things that they do that most of us would likely take for granted: dancing ballet, playing bass clarinet, going off to college, comparing clothes over a video chat. But in the context of hearing about a procedure that seems implausible even today, much less in 1989, these everyday activities were like a series of priceless gifts, given to the Smith family by medical science and the talent and care of the surgeons, pediatricians, nurses and medical ethicists 20 years ago.

Many of those personnel had made it to Chicago for today’s conference, and many of the speakers spoke lovingly of Dr. Christoph Broelsch, the lead surgeon on that first living-donor liver transplant. Broelsch was the other featured speaker of the day, but he found little to talk about after all the preceding talks had outlined the history of the procedure and how it has since spread around the world and been used to extend the lives of thousands of patients. Instead, Broelsch took the time to thank the surgical teams, here and at the two medical centers he subsequently worked at in Germany, and to talk movingly about a failed case in the early days of liver transplantation, and how difficult such failures were to face.

Also moving was Giuliano Testa, director of liver transplantation at the University of Chicago Medical Center who spoke about the importance of protecting the donors in these types of procedures. The pressure of potentially holding the key to saving a loved one’s life often puts the donor in a situation where they may not be able to make an honest decision, Testa said, reinforcing the need for independent donor advocates provided by the hospital. When all agree that donating an organ is the right decision, medically and ethically, for the donor, they should be emphatically saluted, Testa said.

“It is only through the courage of this mother [Teri Smith], and all mothers, brothers, sisters, and fathers that have gone under our knife, that not only have we saved lives, but become better doctors,” Testa said.

I took several videos of Alyssa and Teri Smith, Christoph Broelsch, and medical ethicist Mark Siegler (who was intricately involved in the 1989 case), that I will post on this site in the future. If you want to read a more detailed account of this event, my live-blog commentary remains below.

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(photo courtesy hivresearch.org)

Rare Encouraging News in HIV and Parkinson’s Disease

HIV/AIDS and Parkinson’s Disease are two areas of medical research where good news is hard to come by, as researchers encounter countless setbacks in trying to translate promising laboratory findings into clinical practice. Both diseases have seen progress in the past decade in ex post facto treatments - preventing the maturity of HIV into AIDS with antiretroviral treatment or reducing the motor symptoms associated with Parkinson’s. But drugs that seemed to offer a cure for either disease, or in the case of Parkinson’s a mere brake to the progression of symptoms, have consistently disappointed in human trials.

That changed - slightly - this week, as two highly-publicized studies were published offering faint glimmers of hope on both disease fronts. Grabbing the most headlines was the first-ever demonstration of a successful HIV vaccine in a study conducted in Thailand but funded by the U.S. Army and the National Institutes of Health. The caveats are flying hot and heavy - the researchers saw only a 31% decrease in the number of HIV cases after treatment with a vaccine and a booster drug, one of the HIV strains protected against is specific to southeast Asia, and mystery lingers over why this particular combination of drugs was protective where so many others have failed. The two drugs used in the Thai trial - one a “primer” and one a “booster” - had themselves failed in previous large clinical trials. But the first small success in protecting against the deadly virus nevertheless encouraged many HIV/AIDS researchers; Dan Barouch, an immunologist at the Beth Israel Deaconess Medical Center in Boston, Massachusetts, told Nature “It’s the largest step forward that’s ever occurred in the HIV-vaccine field, but there’s a tremendous amount of more work that will need to be done.”

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Dr. Michael Millis with Melvin and Raquel Allen (photo by John Easton)

(See Parts One and Two here)

One week after the living-donor liver transplant surgery that saw a portion of Catherine Ortiz’s liver transferred to 11-month-old Raquel Allen, Ortiz’s family visited Allen’s family at Comer Children’s Hospital. Raquel, a day removed from the pediatric intensive care unit, looked as good as new standing on her father’s lap and munching goldfish crackers as TV cameras rolled. She also got her first chance to meet Ortiz’s 1-year-old son, Phoenix, who has already been penciled in as Raquel’s prom date 16 years from now, according to Raquel’s mother Coral Grinage.

Here’s the final video in our three-part series, where surgeon Michael Millis talks about Raquel’s long-term prognosis, Ortiz talks about her recovery from liver-donor surgery and Melvin Allen talks about what’s in store for Raquel’s birthday this Saturday.

Raquel Allen is prepared for surgery August 25th

(See parts One and Three)

One week ago today, I spent the day in two operating rooms of Comer Children’s Hospital at the University of Chicago Medical Center filming a living-donor liver transplant surgery. In one room, the patient was 27-year-old Catherine Ortiz, who had agreed to donate about a quarter of her liver to a co-worker’s young daughter. That patient, 11-month-old Raquel Allen, was brought into an adjacent operating room after doctors confirmed that Ortiz’s liver would be suitable for transplant.

After four hours of surgery, a portion of Ortiz’s liver had been removed and placed on ice as Raquel’s defective liver (she suffers from the congenital disorder biliary atresia) was removed by a second surgical team next door. After a short trip between operating rooms, surgeons placed the liver fragment in Raquel’s abdomen, then very carefully sewed blood vessels and bile ducts together to fully connect the new organ with the infant’s circulatory and digestive systems. At 4:30 p.m., Raquel’s incision was closed, and her new liver began its work - a medical achievement impossible until 20 years ago, now accomplished in less than 8 hours.

Below is a video that takes you inside those operating rooms for a glimpse at this amazing procedure. Since it is surgery, there is some blood and graphic footage, so if you are bothered by that sort of thing, take heed.

Catherine Ortiz is recovering at home after her discharge from the hospital last Thursday, two days after the procedure. Raquel Allen was moved from the pediatric intensive care unit yesterday, and will remain in the hospital for at least another week, including her birthday this Saturday. We’ll check back in with Raquel and her parents for a video to be posted later this week.

The transplant was also featured in the Chicago Sun-Times today. Part 1 of our video series, containing interviews with Raquel’s parents and Catherine, can be found here.

Raquel Allen and her parents before the surgery

(See parts Two and Three)

Twenty years ago this November, the first living-donor liver transplant was performed at the University of Chicago Hospital, transferring a portion of the organ from Teresa Smith to her 9-month-old daughter, Alyssa. In October, the team of surgeons (led by Dr. Christopher Broelsch), pediatricians and ethicists who collaborated on that historic procedure will reunite for a conference, alongside Teresa and Alyssa Smith - now 20 years old and healthy.

Surgeons continue to perform living-donor liver transplants today, and though the procedure has become practically routine for some transplant surgeons, it remains an amazing feat of medicine that seems almost improbable: a piece of one person’s organ granting new life to another. This week, one such gift played out at the University of Chicago Medical Center, as 11-month-old Raquel Allen, diagnosed with biliary atresia (a congenital disease where the liver does not properly secrete bile), received a portion of a donor’s liver. Remarkably, donor Catherine Ortiz is not related to Raquel, but is a co-worker with Raquel’s mother at a Chicago pharmacy.

Raquel’s parents, Catherine and the surgeons were gracious enough to allow us to observe the procedure as it unfolded over 8 hours last week, and for the next few days we’ll be posting a video documentary of the event in three installments. Here’s the first, which contains interviews with Raquel’s parents, Melvin Allen and Coral Grinage, and Catherine Ortiz. Tomorrow, we’ll post footage from the surgeries, and later this week we’ll check in with Raquel and her family as she recovers in Comer Children’s Hospital.