Ectrodactyly

A colleague going on a surgical mission to rural Guatemala asked the author if she could obtain a handheld instrument for the trip. She went one better and provided the hands to operate it, and in return learned new skills along with some unforgettable life lessons.

How many people feel the urge to "give back" to the world through a volunteer adventure like the Peace Corps, despite life choices that have taken them down another path? How many mid-life professionals find new goals and rewards in their careers? And how many of us, on the verge of job burnout, seek the chance to make work exciting and meaningful again?

Thanks to an extraordinary medical mission, I was fortunate to be one of the few.

I had long been involved as a volunteer for church and school programs and employer-sponsored community service projects. But one dream was unrealized: giving direct help to less fortunate people in a foreign country. Years of local volunteer work taught me who and how to ask for needed donations - whether it was cash, time, or supplies. Sometimes, this unpaid work provided more personal satisfaction than any work I did for a paycheck. But nothing prepared me for the personal resources I'd need - and the rewards I would reap - for my participation in a project to bring the benefits of modern surgery to the children of rural Guatemala.

Opportunity knocks

In November 1996, a pediatrician in our institution had recently returned from a medical/surgical volunteer trip to Guatemala and called me to ask whether I could obtain a handheld instrument for use on an upcoming trip. My immediate response was, "And will you need someone to do that testing for you?" Thus began my relationship with Healing the Children, a national nonprofit organization formed to help children throughout the world achieve a healthy, productive life. The aim of HTC is to make a difference in the world, one child at a time. The organization obtains needed medical services and supplies for local children, brings children to the U.S. for medical treatment, and sponsors medical teams that travel abroad. The type of medical service depends entirely on donations, ranging from corporate grants to an annual yard sale held by a local real estate company. Local hospitals also donate equipment and supplies.

As I became more involved with HTC, I volunteered to become an administrator/coordinator of international trips. My "training" trip was scheduled for October 1997 to Guatemala.

Gearing up

As we began to organize the trip and form the team, two surgeons volunteered: a plastic surgeon and an orthopedic hand surgeon. We contacted the Pediatric Foundation in Guatemala City to tell them that our trip was scheduled from October 11-19, 1997 and to provide the names of the members of the surgical team (see box, p. 42). The foundation then decided where we would work and began to seek out children who might benefit from the team's services. To do this, public service announcements are given on TV and over the radio across the country that report when the team is arriving, where the team is working, and what types of surgeries they will be performing. Each team member paid for his or her personal expenses such as airfare, food, and lodging, with corporate grants helping to defray expenses for non-physician members.

Gathering and packing the necessary supplies was a daunting task. Scrub nurses to assist on both surgeons' teams had also volunteered to go along, making it easier to anticipate the surgeons' needs. More help came from various Albuquerque hospitals, which saved and donated unused material from newly opened surgical packs that might otherwise be discarded. From those donations we were able to create many surgical packs for our trip. One Sunday afternoon was spent wrapping up new packs, which were then sterilized at a local hospital.

Other supplies had to be either purchased or donated. My member- ship in our institution's product standards committee put me in contact with many sales representatives, and I felt comfortable asking for donations like gloves (sterile and exam), sutures, and reagent packs for the handheld and other point-of-care instruments we needed. Once the sales people learned the purpose of the trip, they were happy to provide supplies. The nurses did similar solicitations for surgical supplies, as did the anesthesia department for drugs and anesthesia supplies. No one turned us down (for a list of donations, see box, p. 43). Plus, the volunteer services at Lovelace made 50 little teddy bears for the children.

A week before we were scheduled to leave, we realized that none of the hospital pharmacies would be able to donate dantrolene sodium, a costly drug used to treat malignant hyperthermia. Because this problem may occur during pediatric surgery, the anesthesia team felt strongly that the drug was needed. Three days before departure, I made an emergency call to Proctor and Gamble (Cincinnati, OH), the manufacturer. A sympathetic customer service representative told me to fax her a letter that included the intended use and when we needed it; by midday, she called to report that the drug would be delivered by overnight courier. A grateful team received the shipment the afternoon before we left.

As a newcomer to the world of surgery, I was astounded by just how many supplies were needed. Instead of sending the supplies on ahead of our team (and risking their being held up in customs), we decided to carry them on board our flight. All 17 team members were asked to carry only one piece of personal luggage and take a box of supplies as the other allowable piece. It worked: Everything we needed arrived with us, and we were ready to go to work immediately. The only supply we did not bring ourselves because of potential problems with customs, was any narcotic medication for pain relief, which we were able to purchase in Guatemala.

Arrival and triage

We all left together on a Saturday morning and by nightfall were gathered at the Holiday Inn in Guatemala City. Most team members already had professional contact with one another, but this interval gave us the opportunity to bond and to begin planning our strategies for the week. The next morning, we left early for the 3-hour drive through the countryside to Salama where we would spend the week. With 17 adults in one van, we certainly bonded!

The families and children were already waiting for us at the Hospital Nacional Departamental in Salama. We got right to work. One group set up the operating room and post-op areas, while the rest proceeded with screening the long line of children. Each child received an evaluation by the appropriate surgeon and by the anesthesia team, who evaluated the children for respiratory problems or other conditions that might interfere with the administration of anesthesia. The children also received a physical by the team pediatrician that ended with a weigh-in and photograph.

The children were divided into four categories: (1) those who could be helped during this week, (2) those with less severe needs (standbys), (3) those with severe needs who couldn't be helped in Guatemala but might be helped through sponsorship to the U.S., and (4) children with needs other than surgical ones. My healthcare facility sponsored Hugo, a 3-year-old boy who came to the U.S. in February 1998 for surgery. He was here until June 1998 for two surgeries to correct the deformities of his hands, one surgery for intestinal repair and the elimination of his colostomy, and one surgery for cleft lip repair. Most of these procedures were done on an outpatient basis, during which time Hugo's U.S. foster mom, Cathy Cox, RN, cared for him.

Communication was not an insurmountable problem. One of our nurses was fluent in Spanish, some of the team fairly fluent, and the rest of us "managed." By week's end, most of us were able to hold at least simple conversations in Spanish, and some of the Guatemalans were anxious to practice their English. Immersed in the people and their language, we were amazed at how quickly we learned.

By early evening, we had screened about 150 children. During the initial screening, lab work was done on an as needed basis. The surgeons hammered out a surgical schedule for the week, and families were notified when to return to the hospital. Some families were disappointed, of course, but others were thrilled that their children would be helped.

The surgeries begin

Next morning at seven, the first surgeries began. Dr. Eisbach, our plastic surgeon, performed mainly cleft lip and palate repairs as well as some skin grafting. There is a high incidence of cleft lip and palate in this rural population, which may stem in part from a lack of dietary folic acid. Severe and disfiguring burn scars were also frequent because it is common in this area to cook and heat with open flames. Dr. Balcomb, the orthopedic hand surgeon, performed a variety of procedures to correct hand deformities, including cases rarely seen in the U.S. aside from those in textbooks.

One of Dr. Balcomb's little patients, Estefanie, came from an orphanage. It is common for Guatemalan children born with deformities to be abandoned. Estefanie was brought in by her aunt, who was in the process of trying to adopt her. Estefanie had ectrodactyly, a condition that results in hypoplastic, stump-like fingers with tiny nail beds. The surgeon opened up three fingers, inserted bone that had been removed from three toes, and attached it to the metacarpals. If the transplants are successful, the bones will grow and create somewhat usable fingers.

Another little girl, Linse, had Aperts syndrome, a condition associated with syndactyly (fused fingers and toes). Dr. Balcomb had seen Linse the previous year on a mission to another small town, at which time she had separated the index and middle fingers on each hand. This time, she separated the middle finger from the ring finger on each hand, performing the procedure in a zigzag pattern to increase flexibility as the skin grafts heal.

This case offered a rare opportunity for the surgeon to actually see the results of her previous work. Patient follow-up is a big problem. The team does arrange for follow-up care with a local physician, but if the family doesn't return, we never know whether surgery was a long-term success or not. In cases where the child is an orphan, the responsibility for follow-up care falls to the nuns who run the orphanages.

The entire trip was a whirlwind learning experience. I "cross-trained" in the OR as a circulator. Using sterile technique, I prepared additional supplies for the surgeon and nurse as needed. And I watched each surgery with intense curiosity, as virtual miracles were performed. In the laboratory, I observed testing that looked a lot like what I remembered from working in the U.S. in the early 1970's when lab work was performed manually with little automation. I shared the technology we brought with us: a dipstick for urine pregnancy testing (we treated children through 18 years of age), a glucometer (Advantage, Roche Diagnostics/Boehringer Mannheim, Nutley, NJ), and the handheld analyzer that could perform chemistries and a hematocrit in 2 minutes. We used the i-STAT handheld instrument when we suspected anemia or other pre-operative problems and when post-operative complications such as bleeding occurred.

Although the hospital was very clean, universal precautions were an unfamiliar concept. In one exam room, a table was laid out with washed gloves drying off before they would be used again. At the end of each day, the hospital staff would go through our trash and sharps containers, pulling out items that they could sterilize and use again. It was a harsh reminder of how we take the luxury of our disposable culture for granted.

The poverty in Salama differed vastly in scope and depth from even the worst economic disadvantage in the U.S. Children stay in large wards of up to 30 beds, with their families present to take care of all their non-medical needs, including food and hygiene. (Nurses are expected only to dispense medications and watch for complications.) Many children received pain medication only at our physicians' insistence. Because many children live far from the hospital, the whole family stays until a child is released.

Immeasurable benefits

We worked 14-hour days, and completed 55 surgeries in 5 days. No matter how fired we felt, the look on a mother's face as her child was brought back into the ward after surgery was enough to keep us going. The gratitude of the town and the people was heartwarming. As a team, we couldn't help but feel certain that we had made a positive impact on their lives. Many of us planned to return this year, but political strife in the country has delayed a return trip, which has been rescheduled for October 16, 1999. To learn more about this organization and the many ways you can help, contact the national office at the following location:

Healing the Children P.O. Box 9065 Spokane, WA 99209-9065 Phone: (509) 327-4281 Fax: (509) 327-4284 Web site: http://www.travsoft.com/healing/welcome.htm

The mission certainly made a difference for the members of the team. For me, it was a personal renewal, helping me to re-evaluate my priorities and then realign my professional goals with my personal goals. it was a reminder that our lives can be what we make them, for ourselves and others.

Members of the volunteer trip

Surgeons

Teresa Balcomb, MD Karl Eisbach, MD Gerald Yospur, MD

Anesthesia

Hilary Compton, MD David Siegel, MD Lisa Frank, CRNA Paula Robertson, CRNA

Scrub Team

Jon Ghahate, PA Laurie Amens, RN Mary Blessing, RN Karen Moulton, RN

Pre-/Post-Op, Circulators

Donna Brown, RN Walter Chance, RN Eileen Grass, RN Diane Krienitz, DLM(ASCP) Barbara Menendez, RN

Pediatrician

Robert Khanlian, MD

COPYRIGHT 1998 Nelson Publishing
COPYRIGHT 2004 Gale Group