After a two-year journey to become pregnant, Marci and Paul conceived a child, only to hear the words every expectant parent dreads — "There’s a big problem here."
An ultrasound at 20 weeks showed that their fetus had CHAOS (Congenital High Airway Obstruction Syndrome), an exceedingly rare condition in which a tracheal obstruction blocks the flow of lung fluid, distends the lungs and can adversely affect the heart.
Their radiologist had seen six other cases. None survived.
In fact, there are only a handful of CHAOS survivors in the world. However, another doctor referred them to Associate Professor Hanmin Lee, M.D., director of the Fetal Treatment Center at UCSF Benioff Children's Hospital, whose faculty are among the world’s leading experts in this condition. "Dr. Lee returned our phone call that evening," Paul said. "He explained our son's condition and discussed options, and we felt optimistic."
Within a week, Marci and Paul traveled 800 miles to UCSF for assessment. After extensive counseling, the couple ultimately chose to have experimental fetal surgery at 23 weeks. Lee and his team fetoscopically inserted a needle through the uterus and down the fetus’s mouth to create a small hole in the tracheal blockage.
It was unclear whether the surgery had been successful. However, after Marci and Paul returned home, ultrasounds indicated that fluid had slowly drained out of the fetus’s lungs through the surgically created hole in the trachea, allowing the lungs to develop.
Marci went into labor at 27 weeks, and was medically flown back to UCSF. She gave birth at 30 weeks using the EXIT procedure (Ex utero Intrapartum Treatment), a special type of C-section delivery developed at UCSF in which the umbilical cord remains temporarily attached, allowing a continuous supply of oxygenated blood. The surgical team opened her uterus, performed a tracheostomy, and began ventilation before disconnecting the 3 pound, 5 ounce baby from the placenta.
"Kalmin spent the first three months of life in the UCSF Neonatal ICU," Marci said. "That experience bonded our family to the UCSF team." Marci and Paul called UCSF frequently for advice, and relied on Lee’s expertise when making choices throughout their son’s journey. Local surgeons have conducted multiple surgeries to reconstruct Kalmin's airway.
Kalmin, now 2, is running and breathing on his own without a tracheostomy. After his latest bronchoscopy and chest X-ray, Kalmin was discharged by his pulmonologist. "The pulmonologist said if you didn't know his history, you would never know he had a lung condition," Marci said.
"Fetal treatment gave us more than the possibility of life. They gave us the possibility of laughter," Marci said. "At 16 months we heard our son laugh for the first time." Now Kalmin is learning to talk. His latest word: "Yes."
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