Darleth

“What it is basically a large vein inside the head that is taking a lot of the blood from the heart,” explained 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.”

The condition is so rare that even major pediatric centers may only encounter one or two cases every few years. Treating it requires the coordinated expertise of multiple specialties working together over an extended period of time.

“We are happy that here we have that expertise from neurology, neurosurgery, cardiology and neurointerventional specialists,” said Dr. Makoshi. “All these specialties need to come together to manage a patient like this, and we were able to do that here.”

Darleth’s journey would soon test the capabilities of some of the nation’s top pediatric programs.

Among the physicians who rallied to save her life were Dr. Alberto Maud, Neurointerventionalist, Texas Tech Physicians of El Paso and Dr. Natalia Betancourt-Guzman, Pediatric Cardiologist, El Paso Children’s Hospital. When Darleth returned to El Paso Children’s Hospital at just a few months old, her condition had become increasingly critical.

For Dr. Betancourt-Guzman, clear communication with Darleth’s family was just as important as the medical care itself.

“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,” she said. “It helped them be calm and understand what was happening and the risks so they could make a good decision.”

Despite efforts to seek care elsewhere, Darleth’s case was considered too complex.

“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. Maud. “However, none of those accepted Darleth because of the complexity and logistics it implied, as well as the complexity of her particular case.”

For Erika, bringing her daughter back home to El Paso was both emotional and necessary.

“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.”

Walking through the doors of El Paso Children’s Hospital, Erika placed her trust in a team determined to give Darleth a chance.

“We decided to take the bull by the horns,” Dr. 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.”

The preparation for each procedure was meticulous.

“We would rehearse and see exactly, even the route we were going to take for her procedures,” said Ana Alvarado. “Every little step, we worked together to determine the best way to give her a positive outcome.”

From the day she was born, cardiology remained closely involved in her care.

“Our team has been doing echocardiograms since literally day one,” said William Wong, Pediatric Echocardiographer. “We have been scanning her for almost a year now, and ultimately you just accept the fact that she is part of the family.”

That sentiment became a defining part of Darleth’s care.

What began as one of the most challenging cases the hospital had ever faced quickly became personal. Physicians, nurses and specialists remained committed to Darleth and her family throughout every setback and milestone.

“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. Melendez. “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 planning, treatment and collaboration, the team’s efforts paid off.

“The embolization procedures resulted in stabilization of the brain, stabilization of the seizures, stabilization of the heart failure and stabilization of the liver failure,” Dr. 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 families facing overwhelming diagnoses, trust in a highly trained medical team can make all the difference.

“I am left without words,” Erika 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.”

Dr. Maud emphasized that Darleth’s remarkable outcome was the result of a collective effort.

“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 stands as a testament to resilience, determination and the power of specialized pediatric care.

“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.”

Darleth’s survival is more than a medical success story. It is a powerful reminder that world-class pediatric care is available right here at home, giving families hope when they need it most. ###