Teamwork Times Two
By Anne Bennett Swingle
The surgery to separate Lea and Tabea Block will likely go down in the annals of The Johns Hopkins Hospital as one of the most remarkable procedures ever performed here. It wasn’t because it took nearly 30 hours, stretched over a period of three days, or even that it was extremely rare. What made it so unusual was that it touched so many people throughout the institution. Added to the 95 doctors, nurses and technicians on the team were the countless others who worked behind the scenes to make it all happen. Roughly 150 people came together for this one marathon event. All had their “day jobs” as well as personal commitments they had to cancel. But that didn’t matter, because everyone—from the neurosurgeons to the nutrition assistants who came in at the crack of dawn to make sure the team was well fed—wanted to play a role, and everyone wanted to do it flawlessly.
But the procedure remains one of the most daunting endeavors in neurosurgery, one that has been fraught with tragedy. It is not unusual for one or both twins to die, or to survive with serious disabilities. Carson had been involved in separating four such sets of twins. In two of those cases, both twins died. In the other two, the children survived, including the Binder twins, who were separated here in 1987.
Carson had learned about the Block twins from their pediatrician even before they were born. Hailing from a small town in northwest Germany, Nelly and Peter Block had granted the rights to their story to Stern, a German magazine, an arrangement that would help cover the costs of the operation. Photographed and interviewed throughout the spring and summer, the Blocks became popular figures in Germany. Captivated by the twins, who with their bright blue eyes and delicate features resembled Dresden dolls, people there supported them with prayers and financial contributions.
The Hopkins team first met Nelly, Peter and the babies on an evening early in June. One by one or in small groups, neurosurgeons, anesthesiologists, plastic surgeons, and nurses from the pediatric OR and intensive care unit came into Carson’s office and introduced themselves. Then the team, along with the Blocks’ German neurologist, talked over the risks and benefits of surgery. The Blocks, their doctors and the Hopkins team were all in agreement that the twins should be separated. If not, the girls would never be upright, their mobility would be extremely limited, and they would be vulnerable to a host of medical problems.
Extensive radiographic studies—physiologic studies (MR and CT 3-D imaging), done by radiologist Doris Lin, and intricate angiographic studies, conducted by Philippe Gailloud, director of pediatric interventional neuroradiology—revealed that the twins shared vasculature. These studies became the basis of tools that would aid the surgeons both preoperatively and intraoperatively. These included life-size, anatomical models, and a “3-D virtual workbench,” which allowed surgeons to visualize, and even “experience,” the complex anatomy of the twins’ arteries and veins.
Dividing and reconstructing the shared vasculature, which is typical of twins joined at the head, would be the most serious obstacle the surgeons would face. The second greatest obstacle would be skin—having enough of it, that is. Once the girls were separated, the brains would protrude over the skulls like ice cream over the cone.
“There will be no dura on top of the brains,” explained plastic surgeon Rick Redett, referring to the brain’s fibrous covering. “You need vascularized tissue with a blood supply to cover the brains.”
So on June 9, Redett and plastic surgeon Craig Vander Kolk made six tiny incisions on the girls’ heads into which they inserted six tissue expanders—small, rolled-up balloons that would inflate over the next three months as they were gradually filled with sterile fluid and cause the skin to stretch and grow.
Two of Everything
Meanwhile, behind the scenes, preoperative planning was in full swing. Overseeing the lion’s share was Carol James, Carson’s senior physician assistant, universally acknowledged as “the one who made it all happen.” Carson may have been the principal conductor in this “symphony,” but James was the stage manager and concertmaster all rolled into one. She fielded all the e-mails related to the twins and issued group e-mails to the team to keep them up to date. Her listserv included dozens, and each recipient had his own subgroup to keep informed. “This case has had an enormous ripple effect on so many people,” said James. “Everyone is doing this in addition to their regular jobs. Everyone is volunteering: ‘Let me help. What can I do?’”
Carol Gentry, nurse manager of the pediatric OR, oversaw all details having to do with the principal setting of this grand drama: Room 12 on Blalock 7. She and her senior nurses lined up equipment, supplies and OR teams. They contacted everyone who likely would be touched in some way by the surgery: the blood bank, clinical chemistry, clinical engineering, materials management, security, banquet services, vendors who would bring in special equipment, etc.
Room 12 is Hopkins’ biggest OR, but it wasn’t really big enough to contain what this surgery would entail. There would be two of everything: two anesthesia machines, two vital signs monitors, two case carts loaded with disposable supplies and instruments, two back-up carts, etc. Electrician Jerry Mullhausen installed four new 20-amp circuits in Room 12 to handle the overload.
To avoid confusion, everything having to do with Lea—lines, tubes, cords, machines, even the scrubs her team would wear—would be marked with yellow; everything for Tabea, orange. A custom-made operating table used last year in the separation of craniopagus twins at Children’s Hospital of Dallas was shipped up from Texas. This odd-looking contraption rotated with the twins encased within, so as to give surgeons full access to the heads. Nurses practiced prepping and draping the patients; anesthesiologists practiced how they would gain access to them should CPR be required.
On Sept. 2, dozens packed the OR for a “dress rehearsal.” Attired in scrubs, standing before the dual bed, Carson presided. The mood was one of excitement, anticipation. Carson said he had planned the surgery in such a way that he could halt it if he had to. It would work, he emphasized, only with cooperation on the part of all involved. Each person in the room, he said, was the reason that Hopkins was the “number one” hospital in America.
Then Carol James conveyed a message from the Blocks. Nelly had been overwhelmed by the amount of planning the team had done, James reported. She, Nelly, wished them a great deal of success and hoped that God’s blessing would be with them.
The operation actually began on Saturday, Sept. 11, but was halted after about eight hours when Tabea had a lethal arrhythmia, and the anesthesiologists, who had practiced for just such an event, resuscitated her. On the morning of Wednesday, Sept. 15, after three days in the intensive care unit, the twins returned to Room 12. “It went like clockwork,” said pediatric neurosurgeon George Jallo. “We all worked together as one machine.”
But late that night, as the moment of separation drew near, Tabea again developed cardiac difficulties. The twins were separated at 12:15 a.m. Despite valiant and extensive efforts to revive her, Tabea died about an hour later.
For the team, help was at hand. Neurologist Mike Williams had assembled a group of social workers, clergy and pediatric palliative care specialists who stood by, ready to counsel anyone who needed it. And there was also, of course, Lea. She had survived. In the coming months, she will need a great deal of medical care, including surgery, but, as Carson noted at the press conference, she now has a chance at healthy, independent life.
Most of all, what remained for the team was the feeling that they had, in fact, done as they had planned: They had given their best. “We orchestrated a wonderful symphony,” Carson said. “The harmony and teamwork that ensued is something I don’t think anyone will ever forget.”
—Reporters Lindsay Roylance and Judy Minkove contributed to this story
Some 150 people were touched by the procedure. Here is but a sampling: