Rachel’s Story

International news media recently carried a story concerning the the first synthetic organ tissue transplant performed by Dr Paolo Macchiarini. Dr. Macchiarini is a newly appointed Professor of Regenerative Surgery at the Karolinska Institute in Stockholm, practitioner Sweden. He also works in Florence, Italy and Barcelona, Spain. He performed this historic surgery in Stockholm, transplanting a trachea which had been grown on a bio-synthetic matrix using the patient’s own stem cells. Macchiarini and his team have performed ten such operations in the past two years using stem cell regeneration, but all previous operations have used a matrix or “scaffold” from a human donor. The successful medical breakthrough of the use of a bio-synthetic matrix means that not only will doctors in the near future be able to reconstruct ailing body parts using the patient’s own stem cells, and thereby greatly reducing the possibility of rejection of the transplanted tissue, but they will also be able to precisely construct those parts using a computer to create a matrix that will exactly match the structure of the patient’s original tissue.

Dr Macchiarini was recently in Burlington, Vermont speaking at a conference on Regenerative Medicine at the University of Vermont. However, most people are not aware that a part of the reason for his visit was to evaluate Rachel Phillips, a Burlington resident, for this surgery.

Rachel is 34 years old and a former dancer with the Royal Ballet of London. She also danced at the Kirov in Russia, the Nashville Ballet, Ballet West in Salt Lake City, Utah and other dance companies both here and abroad. Rachel and her husband Steven moved to Vermont originally to start a performing arts school.

Unfortunately, she developed a serious medical condition that has caused her to put her life on hold for the past several years. Her airways are failing from severe tracheobronchomalasia (TBM), a condition that causes trachea and bronchial airways to collapse. The underlying condition that brought about this problem in her case was Ehlers-Danlos Syndrome (EDS) – a genetic, connective tissue disorder that affects the collagen in the body.

Over the past two years, doctors have tried numerous surgeries, tests, and other procedures – including over 30 bronchoscopies in the past twelve months alone – in an attempt to try to find a solution for her. However, recent test have verified that she is currently collapsing approximately 90% on normal exhalation – a condition which requires her to wear a special, portable continuous positive airway pressure (CPAP) unit with oxygen support to be able to keep her oxygen levels acceptable.

She also has a special service dog named Siena, a four year old Labradoodle who is specially trained to detect, by scent, a decline in her oxygen levels and warn her when they fall below acceptable limits. Last fall, Rachel had a tracheobronchoplasty surgery in Boston to try to hold her airways open using a surgical mesh to strengthen the back of the tissue. However, the procedure has proved unsuccessful.

Last month Rachel and Steven met with Armin Ernst, MD (Caritas Christi Health Care in Boston, MA) who has been advising them on the case for over a year now. After his bronchoscopy and review, they were told that there were no other options that they could offer them in the US and that the collapse has rapidly worsened since the operation last fall. Dr. Ernst recommended that they contact Dr. Macchiarini to seriously consider the regenerative transplant option.

They initially met with one of Dr. Macchiarini’s associates who was in Burlington, Vermont last month for a review of her case. At that time Rachel and Steven were told that they would likely be able to offer the surgery to us, pending additional tests and a final review of the case. Earlier this week, we met with Dr. Macchiarini at Fletcher Allen Medical Center in Burlington, Vermont for an extensive evaluation of her condition, including, yet another bronchoscopy. After looking at the results, Paolo offered to take her case and is currently preparing the paperwork to allow him to operate on Rachel to attempt to repair the failed surgery. He will be taking stem cells from Rachel to grow a bio-synthetic airway replacement to be able to transplant immediately if the surgical repair is unable to correct the situation.

Rachel and Steven were also told that they have exhausted all other options and, without the surgery, Rachel will die from the condition. The extent of the collapse has progressed so rapidly that waiting as much as a year is no longer an option.

Dr. Macchiarini is making tentative plans to do the surgery sometime in October. At this time, it is uncertain if the procedure will be done in Europe or here in the US, which may be more problematic than the European option due to regulatory issues. Rachel and Steven are currently in the process of trying to find funding options to offset the costs of the procedure which, we are told could run up to $300,000, not including the cost for an extended potential stay oversees for the procedure and recovery period, if it cannot be done in the States. This is in spite of the fact that Dr. Macchiarini has offered to do his part at no cost to them. Nonetheless, the financial issues represent a huge mountain for us to climb.

Macchiarini is also an outspoken advocate of health care reform. He believes it to be

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