Nov. 8, 2011
For a Future Twice as Nice
Dominican conjoined twins seek hope from Children’s Hospital of Richmond at VCU
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It was a mother’s intuition. Double doses of morning sickness, feeling larger earlier on in the pregnancy, and an all-over abnormal feeling were signs telling Lisandra Sanatis that she was carrying more than one baby.
This was her fourth pregnancy. Already a mother of three children, the native of the Dominican Republic said that as compared to her previous pregnancies, this time around she was just “doubly sick.”
At six months along, Lisandra said she looked like she was about to burst. An ultrasound shortly after would confirm her intuition. She was carrying not one, but two babies in her womb.
In the months that followed, Lisandra continued with her prenatal checkups and an uncomfortable pregnancy where she could barely sit or stand for long periods.
During her eighth month, she had to be admitted into the hospital. The concerned mother said she could feel her babies moving, but only at the top and bottom of her abdomen.
Then on a Thursday morning around 2 a.m., Lisandra began to experience labor pains. Her doctors decided to perform a Caesarian delivery.
“One doctor started making an incision thinking to pull one of the twins out at a time,” said Lisandra. “She was struggling and told the other doctor – ‘I think that they’re conjoined, I can’t get them out.’ That’s when they had to open up my incision further and that’s when I saw the two babies.”
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A nurse told Lisandra to look at her two little girls. She also told the mother that the babies were conjoined and they may not make it. But Lisandra was determined to care for her little girls, whom she named Maria and Teresa. From that moment on, she says she put her faith in God.
The news about the twins’ birth spread around their country and soon made its way to the first lady of the Dominican Republic.
“When the first lady of the Dominican Republic came to see me and the girls, she made a promise to us that everything was going to be OK,” said Lisandra. “Then I knew a door was opening and she stuck by her promise.”
The critical care and resources for the type of care that Maria and Teresa required were not available in the Dominican Republic, but after countless efforts made by the first lady’s office and others who banded together in support of the family, Lisandra and her twin daughters were introduced to the World Pediatric Project – an organization whose main mission is to link worldwide pediatric surgical, diagnostic and preventative resources to critically ill children in developing countries.
It was through WPP that Lisandra discovered a team of health care workers in the United States prepared to evaluate Maria and Teresa. The team was being led by David Lanning, M.D., Ph.D., associate professor in the Department of Surgery and surgeon-in-chief, Children’s Hospital of Richmond at VCU. Lanning’s background included an existing relationship with WPP and extensive experience in the treatment of complex cases of children from developing countries.
“We have a lot of experience in caring for kids with a variety of complex problems and also with World Pediatric Project,” said Lanning. “This is what they've been doing for 10 years – bringing families up – children that need surgical care. So the system is in place for all the support services that are needed.”
Lanning and his colleagues, who included Jennifer Rhodes, M.D., assistant professor in the Department of Surgery and director of the VCU Center for Craniofacial Care, began to review the case and along with WPP, coordinated the twins’ first trip to the Children's Hospital of Richmond at VCU in December 2010.
Through initial evaluations, Lanning informed the mother that the chance of performing a successful separation surgery for the twins appeared to be highly favorable.
Lisandra and her twins returned to the Dominican, and Lanning and the team spent the next several months working with the family to reach out to extended family members, church members and their community in hopes of finding a living liver donor. When no successful match could be found after nearly nine months, Lisandra decided to proceed with plans for the separation surgery.
“They are fortunate to have just a handful of organs that are shared and otherwise separate and normally functioning organs through the vast majority of the body, such as the lungs, hearts, urinary systems and extremities,” said Lanning. “They really are two different girls and they do seem as though they want to move in different directions. They're active and they want to move in different directions often and so we are supportive of mom and her family's wishes to proceed.”
While Lisandra’s husband remained in the Dominican Republic with their other children, Lisandra, the twins and their aunt returned to Richmond at the end of August to prepare for the upcoming surgery. The twins would be nearby for a series of appointments to help the surgical team plan for the critical procedure. This included MRIs to delineate their anatomy, preliminary routine tests and a procedure in the operating room to place special skin expanders on the girls.
But the preliminary surgical support was not just being limited to the medical community. Rhodes, through her leadership within the VCU Center for Craniofacial Care, managed to coordinate several projects for the twins and several others from within VCU who began to reach out and rally behind the girls.
This included a dress-making workshop led by Kristin Caskey, associate professor and interim assistant chair of VCU’s Department of Fashion Design and Merchandising. Caskey, along with a group of students and other volunteer faculty provided the girls with a comfortable and stylish selection of dresses as they awaited their separation surgery. The girls also received bumble bee Halloween costumes they wore for a party at the World Pediatric Project.
Another effort was a plaster body casting mold created by Morgan Yacoe, a senior in VCU’s Department of Sculpture. Yacoe and VCU Sculpture graduate Kristi South collaborated with Rhodes to develop an accurate mold of the twins that assisted plastic surgeons in determining the best way to cosmetically care for them after separation.
In addition, Audrey Kane, a VCU occupational therapist and certified car seat technician, designed a special car seat large enough to accommodate the twins for comfortable vehicle travel. As a result, the twins did not need to depend on ambulance transportation and could even safely take part in other activities such as play dates and a visit to a garden.
“It's made me very proud to be part of this organization to see everybody rise to the occasion and deliver the care with such a high level of expertise and in a compassionate way,” said Lanning.
Lanning, Rhodes and the rest of their team members meticulously planned the surgical procedure with numerous meetings, simulation discussions and a detailed operative timetable.
“I’ve been preparing through my faith in God with everyone’s support and their prayers and I pray to God that the doctors will do everything that they can to help,” said Lisandra. “I’ve cried a lot and laughed a lot seeing them grow up but I know that the day I see them separated will be the biggest day of my life. Absolutely, I will be the happiest woman in the world.”
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