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Teamwork Times Two
From all corners of the hospital, people came together in a heroic, days-long effort to separate conjoined twins

By Anne Bennett Swingle

Late in the day, on the afternoon of Sept. 16, the team that separated 13-month-old conjoined twins Lea and Tabea Block reassembled to face the media in a crowded conference room packed with camera crews. This was to have been an exuberant occasion, but the mood was grim. Only hours before, very early that morning, Tabea had died after separation. “I speak for the whole team in saying we are deeply saddened by Tabea’s passing,” said Ben Carson, who had led the team. “We have high hopes for Lea, who now has a good chance at leading a healthy, independent life.”

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.

Craniopagus Twins

Nelly and Peter Block with the twins at the Hopkins Children's House in June.
Twins connected at the head, known as craniopagus, are the rarest of conjoined twins, occurring approximately once in every 2 million live births. Today, with technological advances in brain imaging, plastic techniques and anesthesia—not to mention the publicity surrounding a couple of recent successful separations—more twins like these are being evaluated for separation at pediatric neurosurgical centers.

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 Challenges

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.

  Radiology's Meiyappan Solaiyappan at the 3-D Virtual Workbench, which integrated angiogram, CT and MRI images to create a 3-D floating image of the twins' heads. Using 3-D glasses, a joystick and a pointer, surgeons could identify external landmarks that would help them reach certain parts of the brain.

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.

Surgery Nears

Led by Ben Carson, center, with arms raised, the team listens up during the surgical rehearsal on Sept. 2. The dual rotating bed would come apart when the twins were separated.
On Aug. 19, with less than a month to go before the surgery, Nelly and Peter came to the hospital to give informed consent for the surgery and anesthesia. It was a big deal, an affair that lasted for an hour and a half, one deemed so momentous by the hospital’s legal department that it was videotaped and placed on a CD. The German neurologist had returned expressly for the occasion to explain everything to the Blocks; a translator, provided by International Services, took notes. (Alexa Dubray, the translator who worked with the Blocks throughout, was unable to be there on that day.)

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.

True Harmony

One of the things that made this surgery so unusual was that, while it was entirely planned by the pediatric service, it also included doctors, nurses and techs from adult neurosurgery. This confluence of experts infused the OR with a certain chemistry that few had ever experienced. “One hundred and fifty people, doctors and nurses, in and out of the OR, working together,” said Henry Brem, director of the Department of Neurosurgery and part of the team. “It was the most extraordinary tour de force I’ve ever seen in my career.”

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.

Lea, on her own.

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:

 
First row, left to right: George Jallo, neurosurgeon; Deb Schwengel, anesthesiologist; Ben Carson, Team Leader; Rafael Tamargo, neurosurgeon; Carol James, Carson’s P.A.; Don Long, neurosurgeon; Danielle Lettau, nurse, pediatrics GOR; Carol Gentry, nurse manager, pediatrics GOR.

Second row: Delores Njoku, anesthesiologist; Sue Eller, research tech, Blalock 12; M.H. Winter, nurse, pediatric GOR; Meiyappan Solaiyappan, Radiology; Rick Redett, plastic surgeon; Ivor Berkowitz, medical director, PICU; Myron Yaster, anesthesiologist; Sandra Mitchell, banquet services.

Third row: Jerry Mullhausen, electrician; Henry Brem, neurosurgeon; Eric Jackson, anesthesiologist; Staci Vernick Goldberg, Public Affairs; Philippe Gailloud, neuroradiologist; Mark Nicholson, nurse, adult neuro; Derryll Wristpus, security officer.

 

 

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