By Jorge A. Lazareff, M.D.
Illustration by Alicia Buelow
NEAR THE END OF JULY 2001, Alba Leticia Alvarez de Quiej went into labor. She and her husband, Wenceslao, were anticipating the birth of their first child. But in spite of the help from midwives of Suchitepéquez, the southwestern region of Guatemala where they live, Alba’s efforts to deliver were fruitless.
After two days of excruciating pain, she was exhausted. Wenceslao asked the landlord of the banana farm where he worked for a pickup truck, so he could drive his wife to a hospital in Mazatenango, the regional capital. In Mazatenango, doctors obtained an abdominal ultrasound, the first Alba Leticia ever had, and diagnosed that the Quiej babies were twin girls and that they were conjoined at the head.
When the girls emerged, none of the physicians and nurses in Mazatenango had ever seen similar newborns. There was no Neonatal Intensive Care Unit at the hospital, but through sound clinical and nursing skill, the medical team helped the girls to overcome their precarious physiological condition. It was clear to anyone who looked at them that the girls would face significant difficulties, and the immediate impulse was to separate them as if what held the babies together was merely layers of malformed tissue that would dissolve under gentle pressure.
A few weeks later, Maria Teresa Quiej Alvarez and her sister Maria de Jesus Quiej Alvarez were transferred from Mazatenango to a Social Security hospital in downtown Guatemala City. Radiological studies revealed that their cerebral circulation was interchanged through a venous network that bridged their contiguous brains. This anatomical anomaly prevented the local surgeons from attempting their separation. So a Guatemalan non-profit organization contacted an American counterpart, and they began to search for a hospital where the girls could be separated.
One of the hospitals they approached was UCLA. Some centers concluded that the surgery was not feasible, and others were ready and willing. We were chosen over some other prestigious universities for reasons that were more poetic than scientific; of all the surgeons in the U.S. and Canada who examined photographs of the twins, I apparently was the only one who asked the simple question: “Who is Maria Teresa and who is Maria de Jesus?”
While sitting with Alba and Wencesloa on a wooden bench outside of the pediatric ward at the Social Security Hospital, I shared my uncertainties about being able to perform a successful procedure, and they shared their fear that their daughters would live stigmatized lives and be ostracized because of their malformation.
During that visit, I met Maria Teresa and Maria de Jesus, Las Maritas. They were robust and happy babies, though their movements were limited to rolling within their small crib. In the hospital, there was no stigma. Nurses, doctors and everybody else adored the girls. When they left the hospital to come to Los Angeles – flying here on a plane that was donated by a generous benefactor – their farewell party was memorable.
On their first night at UCLA Mattel Children’s Hospital, the nurses handcrafted a unique setting for them by joining two cribs together and padding the boundaries with pillows tied to the bars. Someone brought a mirror and showed each girl the reflection of her sister’s face – a face neither had ever seen before.
The surgery to separate Las Maritas was covered by media from throughout the United States and Guatemala. Today, the limelight has faded, and the twins, who now live in the United States, live their different biological realities. Maria de Jesus is becoming an independent 10-year-old, while Maria Teresa still is reeling from the devastating meningitis that struck her four months after she arrived back home in Guatemala following the separation surgery.
In the U.S., their foster families love them. Jenny Hull and the Cajas family are the extension of those first healthcare workers in Mazatenango. It is a chain of kindness that began well before Maria de Jesus and Maria Teresa became known as Las Maritas, a chain of kindness that will continue throughout their lives. T
The story of Maria Teresa and Maria de Jesus Quiej Alvarez brings me back to the first stanza of Questions From a Worker Who Reads-by Bertolt Brecht: “Who built Thebes of the seven gates?/In the books you will find the names of kings/Did the kings haul up the lumps of rock?” And this is the beauty of medicine: It assembles people with different understandings of the realities of life and knits them together in a united effort to do the difficult work of helping to heal a stranger in need.
Dr. Jorge A. Lazareff is the Geri and Richard Brawerman Chair in Pediatric Neurosurgery in the David Geffen School of Medicine at UCLA