It took a team to save this baby and his mom
As a pregnant teenager, Sofia Espinoza lugged her backpack and extra weight up and down the stairs at Addison Trail High School. She took advantage of pregnancy advice from school counselors, graduated early and married her boyfriend, Juan Carlos Guzman. Even with the 12 hours of labor, becoming a mom was almost a breeze.
“I wanted a girl, so I even accomplished that. It was great,” Espinoza says of that pregnancy resulting in the birth of their daughter, Emily Jaylin Guzman, now 2 years old. “It was so easy.”
That experience didn't prepare her for the birth of her son.
“John,” Espinoza says of her recent pregnancy that threatened to kill her son and her, “is a totally different story.”
Fatigued and vomiting frequently last summer, Espinoza quit her job as a patient care technician taking care of a disabled man in his home so that she could concentrate on her pregnancy.
“I want to close the factory, so let's make it a boy,” Espinoza proclaimed confidently, deciding a son and daughter would make their family complete.
During a routine ultrasound at 25 weeks, a technician in a Bloomingdale clinic saw something on the screen and left the room to find a doctor.
“What's wrong with this lady?” Espinoza remembers thinking. “Just tell me the baby's gender.”
A doctor told her the baby was a boy, with a cyst on his head.
“I never heard of a cyst on the head. Maybe it's a pimple,” Espinoza told herself, but it didn't stop her tears.
“I was scared,” Guzman says.
A high-tech ultrasound a week later revealed that the growth was a cerebral teratoma, a rare, benign tumor that shows up just once in as many as 40,000 births.
“If you make a C with your hand, that's how big the tumor was,” Espinoza says. “Almost as big as his head.”
The tumor continued to grow as quickly as her baby. In one MRI, the tumor looked as if could be a second head.
“I'm sorry, my son. If only I could have helped you,” Espinoza wrote in a scrapbook. She searched the Internet for information and couldn't find a success story.
“If only there was a way out. If only I could just hold you and cure you,” Espinoza wrote in the scrapbook. “If only I could be the one to save you.”
Instead, it took a community of experts at the University of Chicago Medicine to save John and his mom.
“We immediately had to assemble our team,” recalls Dr. Laura DiGiovanni, director of The Fetal Center at the University of Chicago Medicine. Between 20 and 30 doctors worked on a special delivery procedure called EXIT (Ex Utero Intrapartum Treatment), a much more complicated C-section in which the baby's head is delivered so doctors can get a breathing tube down the throat while the rest of the baby stays inside the uterus, connected to the mother's life-support system. The tumor pushing on the baby's throat prevented him from breathing on his own.
“Without this EXIT procedure, this baby would not have survived,” DiGiovanni says.
“It was like a horror movie,” Espinoza said when she saw the photographs from the surgery. Doctors lifted her uterus out of her body and cut it open to reveal John's head and tumor. This placed the mom at a greater risk of infection and bleeding to death.
Doctors then began the delicate process of inserting a breathing tube smaller than a soda straw down the baby's throat, without damaging the voice box or nicking an artery.
“Once they get in trouble, you have to hustle and put the tube in very quickly,” says Dr. Fuad Baroody, director of pediatric otolaryngology, who inserted the tube and had John hooked up to a breathing machine in less than 20 minutes.
Then the team cut the umbilical cord and moved John from the Mitchell Hospital to the Comer Children's Hospital on the University of Chicago Medicine campus to begin the delicate work of removing his tumor. The tumor resembled a garlic clove or a large water balloon with different chambers, doctors say.
“This mass was mostly fluid-filled,” says Dr. Deborah Loeff, a pediatric surgeon with expertise in removing tumors.
Using specialized equipment designed for newborns, doctors Loeff and Baroody began to push, probe and peel away healthy tissue to expose the tumor.
“They were like Batman and Robin,” Espinoza says of Loeff and Baroody.
“A lot of it is finger work,” Loeff says. “We can feel pulses. The nerves, which can be the size of hairs, can be much trickier.”
A damaged nerve could ruin the baby's ability to swallow, make noise, smile or properly move all the muscles in his face.
“It's an orchestrated team effort,” DiGiovanni says. One that began weeks before the delivery.
“We had a dress rehearsal where we all went to labor and delivery and stood in the places to make sure everyone was in the right places,” Loeff says, noting that they even made sure the room had enough electrical sockets for all the special equipment. Doctors planned for everything that could go wrong.
Almost nothing did.
“Everything went perfectly,” DiGiovanni says, “except that she went into labor in the middle of the night five or six days before we had planned.”
Giving birth on Valentine's Day made it even more special, says Espinoza, who went into the hospital shortly after midnight that morning, worrying that she and her baby would die.
“I told God, 'Thanks for giving so much time. We'll see what happens when I wake up,'” she remembers.
While doctors will monitor John to make sure a tumor doesn't reappear, the boy has no lasting health effects from his traumatic birth.
“He looks great,” Baroody says.
People have no idea what the mother and son went through unless Espinoza shows them gory photographs. A vertical scar spans her abdomen. John has a nicely healing scar on his neck and some excess skin that once covered his tumor.
A plastic surgeon could remove that wrinkly skin if it remains after John grows.
“I love Chinese Shar-Peis, and that's how his skin is under his chin,” his 21-year-old mom says with a laugh.
Once not even certain that she'd be alive to celebrate Mother's Day with her husband and daughter, she now has a son and the family she always wanted.
“It will,” Espinoza says, “be a very special Mother's Day.”