When Erika Muñoz was 34 weeks pregnant, she received devastating news: her unborn daughter, Darleth, had been diagnosed with Vein of Galen malformation, an extremely rare and life-threatening vascular condition affecting blood vessels in the brain.
Today, thanks to the extraordinary efforts of a multidisciplinary team at El Paso Children’s Hospital, Darleth is home with her family after overcoming one of the most complex pediatric cases the hospital has ever treated.
“What it is is basically a large vein inside the head that is taking a lot of the blood from the heart,” said Dr. Ziyad Makoshi, medical director of pediatric neurosurgery at El Paso Children’s Hospital. “The heart is then having to pump additionally, and that is the issue that we run into early on. The heart starts to fail, so our cardiologists are extremely important to help stabilize these kids.”
Vein of Galen malformation is exceptionally rare, with many pediatric centers encountering only one or two cases every few years. Successful treatment requires extensive coordination among multiple specialties, including neurology, neurosurgery, cardiology, neurointerventional radiology and critical care.
“We are happy that here we have that expertise from neurology, neurosurgery, cardiology and neurointerventional specialists,” Makoshi said. “All these specialties need to come together to manage a patient like this, and we were able to do that here.”
As Darleth’s condition became increasingly critical during infancy, her family sought treatment options at major pediatric centers across the country. However, the complexity of her condition presented significant challenges.
“When she arrived at that catastrophic state, we tried to connect to the main centers that have the highest experience in the country for Vein of Galen malformation,” said Dr. Alberto Maud, neurointerventionalist at Texas Tech Physicians of El Paso. “However, none of those accepted Darleth because of the complexity and logistics it implied, as well as the complexity of her particular case.”
Faced with limited options and months away from home, Erika made the decision to bring her daughter back to El Paso.
“The truth is it was eight or nine months of agony out of El Paso because aside from this, I have three other kids,” Erika said. “It was really stressful because I also had to care for them, not just for her. So I made the decision to bring her back to El Paso Children’s, and I am very grateful because they have helped me so much.”
Once Darleth returned to El Paso Children’s Hospital, physicians across numerous specialties came together to develop an aggressive treatment strategy.
“We decided to take the bull by the horns,” Maud said. “We reunited multidisciplinary teams, including neurosurgery, pediatric neurology, neurointervention, PICU, CICU, anesthesia and cardiology. Together we made an extraordinary effort that resulted in six or seven consecutive embolization procedures to tackle this vascular malformation.”
Each procedure required meticulous planning and coordination among clinical teams.
“We would rehearse and see exactly, even the route we were going to take for her procedures,” said Ana Alvarado, who is a Critical Care Registered Nurse at El Paso Children’s Hospital. “Every little step, we worked together to determine the best way to give her a positive outcome.”
Communication with Darleth’s family remained a critical component of her care. Dr. Natalia Betancourt-Guzman, a pediatric cardiologist at El Paso Children’s Hospital, worked closely with the family to ensure they understood the complex medical decisions ahead.
“Dad only spoke Spanish, so the fact that I could sit with him and explain something so complex in his first language was something very beneficial for them,” Betancourt-Guzman said. “It helped them be calm and understand what was happening and the risks so they could make a good decision.”
From the day Darleth was born, specialists closely monitored her heart function as they worked to stabilize her condition.
“Our team has been doing echocardiograms since literally day one,” said William Wong, pediatric echocardiographer at El Paso Children’s Hospital. “We have been scanning her for almost a year now, and ultimately you just accept the fact that she is part of the family.”
The commitment of physicians, nurses, therapists and support staff became a defining part of Darleth’s journey.
“When you have a patient who has such a complex disease, it really emphasizes why you need physicians who love taking care of kids and love taking care of their families,” said Dr. Alejandra Melendez-Zaidi, pediatric epileptologist at Texas Tech Physicians of El Paso and El Paso Children’s Hospital. “That’s pediatrics, and that’s why you need a place that allows for the coordination of all those resources and interactions.”
After months of treatment and collaboration, the team’s efforts produced remarkable results.
“The embolization procedures resulted in stabilization of the brain, stabilization of seizures, stabilization of heart failure and stabilization of liver failure,” Maud said. “That allowed a baby who was close to nine months old to breathe by herself, come off the ventilator and finally be discharged home.”
For Erika, the outcome exceeded every expectation.
“I am left without words,” she said. “I am so grateful because this is my daughter that I had before. Thank you so much from the bottom of my heart. We are always going to remember you. I am always going to remind Darleth about what they did for her.”
Maud emphasized that Darleth’s recovery reflects the collective dedication of countless caregivers, as well as the unwavering support of her family.
“Outcomes like this are possible because of our nursing staff, our PICU staff, our administration and everyone involved in providing the highest level of care for children with brain diseases,” he said. “But we cannot overlook the role of her mother, her sisters and the family support throughout the entire process. The trust they gave us to take care of Darleth’s brain was unparalleled.”
Today, Darleth’s story serves as a powerful reminder that advanced pediatric specialty care is available close to home for families across the Borderland region. Her recovery reflects the strength of multidisciplinary collaboration, innovative treatment and the resilience of a child who never stopped fighting.
“Look at us and where we arrived,” Erika said. “The effort that she put in, she is a strong girl. I didn’t expect this, but she has proven to us that she is so strong, and I am so happy to be her mom.”
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