El Paso, Texas (KFOX 14) — After months of uncertainty and multiple procedures for a rare, life-threatening brain condition, an El Paso mother has brought her infant daughter home.
According to the El Paso Children’s Hospital, Erika Muñoz was 34 weeks pregnant when she learned that 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.
“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.”
As Darleth’s condition became increasingly critical during infancy, Muñoz said the family looked for treatment options at major pediatric centers across the country, but her daughter’s case presented significant challenges and was rejected. Muñoz said she ultimately decided to return to El Paso for care.
“The truth is, it was eight or nine months of agony out of El Paso because aside from this, I have three other kids,” Muñoz 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.”
Doctors said treating Vein of Galen malformation requires extensive coordination across specialties, including neurology, neurosurgery, cardiology, neurointerventional radiology, and critical care.
“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, a neurointerventionalist who worked on Darleth’s case. “However, none of those accepted Darleth because of the complexity and logistics it implied, as well as the complexity of her particular case.”
However, at El Paso Children’s Hospital, Maud said teams across numerous specialties were able to develop an aggressive treatment plan that included multiple procedures.
“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.”
On Monday, after months of procedures, El Paso Children’s Hospital said Darleth is now home after what the hospital described as one of the most complex pediatric cases it has ever treated.
“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.”
For Muñoz, the ability to bring her daughter home was overwhelming, as she expressed her gratitude.
“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.”
According to Maud, the embolization procedures led to major improvements in Darleth.
“The embolization procedures resulted in stabilization of the brain, stabilization of the seizures, stabilization of the heart failure, and stabilization of the 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.”
He added, “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.”
Meanwhile, Muñoz said her daughter’s progress has been a testament to Darleth’s strength.
“Look at us and where we arrived. 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,” Muñoz said.
Erika Munoz was 34 weeks pregnant when doctors delivered news no parent is prepared to hear: Her unborn daughter had a rare vein of Galen malformation affecting the blood vessels in her brain.
Caption: Erika Munoz was 34 weeks pregnant when doctors delivered news no parent is prepared to hear: Her unborn daughter had a rare vein of Galen malformation affecting the blood vessels in her brain. More About El Paso Children’s Hospital
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