Infant with Body-Sized Tumor Saved by Maternal-Fetal Medicine and Pediatric Specialists at Holtz Children’s Hospital

By: Miranda Torres

Susan Aguirre, 37, had one goal – to give her two-year-old daughter a sibling to grow up with. She was weary about getting pregnant again, but jumped into the process since her first pregnancy went so well. During her 10-week ultrasound, however, her joy quickly turned to worry.

Anna Sfakianaki, MD, a maternal-fetal medicine specialist at The Women’s Hospital at Jackson Memorial, discovered a tumor growing on the baby’s spine. She suspected it could be spina bifida, a birth defect where the spine fails to develop properly. This meant Aguirre’s baby might be born with physical and intellectual disabilities.

“The reason I wanted to have a second baby was so my daughter could have a best friend,” Aguirre said. “Now I was going to have a baby that was going to see my other daughter run and move and they wouldn’t be able to.”

After the discovery, she was referred to Rodrigo Ruano, MD, PhD, director of the UHealth Jackson Fetal Care Center and division chief of UHealth Jackson Maternal-Fetal Medicine, who ruled out spina bifida, but confirmed a rare tumor on the baby’s tailbone called a sacrococcygeal teratoma.

Sacrococcygeal teratomas can be fatal, with some cases leading to cardiac failure or hydrops, which cause fluid to build up in the baby’s tissues and organs. The tumor can also harm expectant mothers through mirror syndrome, a rare condition that can lead to severe preeclampsia and premature birth.

Dr. Ruano gave Aguirre and her family the option to do in utero surgery to remove the tumor, laser the vessel that was feeding the tumor in order to stop its growth, or closely monitor the fetal cardiac function with fetal echocardiograms (echo) and ultrasound exams. They decided to monitor the baby closely and plan a delivery via Cesarean section at 30 weeks.

“After we received the diagnosis, I drove to my in-laws house and just started praying for our baby. Every day from the moment I got that news, I started waking up at 5 a.m. to pray,” Aguirre said. “We believed God was going to help us through this journey, and that’s what kept us going.”

She began receiving fetal echos once a week to ensure the baby’s heart was healthy. During her visits, Dr. Ruano introduced Aguirre and her husband to the pediatric surgery and NICU teams at Holtz Children’s Hospital that would be caring for her baby immediately after birth.

At 28 weeks, the fetal echo showed the baby’s right heart ventricle was beating harder than the left ventricle. Dr. Ruano and the pediatric surgery and NICU teams decided to change the plan from elective C-section to ex-utero intrapartum treatment (EXIT) surgery in order to minimize potential trauma to the tumor. An EXIT procedure is a special technique where the baby is delivered through an incision in the uterus and stabilized before separation from the placenta.

On September 26, 2023, Anaiah Carrazana was born and safely transferred to the NICU without rupturing the tumor.

“We named her Anaiah because it means, ‘God has answered my prayers,’” Aguirre said. “When I found that name, I knew everything was going to be ok.”

Ann Brady, MD, a pediatric surgeon at Holtz Children’s, and her team removed the teratoma the day after the delivery. The benign tumor weighed half of Anaiah’s total body weight, which caused the baby girl to lose the majority of her blood supply during the removal. Due to the tumor’s location on her tailbone, her intestines were also affected, resulting in her inability to control the muscles in that area and requiring a colostomy bag be placed. After a month-long hospitalization in the NICU, Anaiah was discharged and welcomed home by her big sister, Brielle, who loves having a sibling.

Anaiah will receive follow-up care with an oncologist to follow cancer antigen markers in the blood, and serial ultrasounds to make sure the tumor does not return. She has also begun outpatient physical therapy to ensure she meets her developmental milestones.

“Honestly, I feel like God did his work through Dr. Ruano. He was so amazing and not only was wonderful because he saved my baby’s life, but he also gave me confidence and comfort the entire way through,” Aguirre said. “I couldn’t be more thankful to him and Dr. Brady. They are two angels that God sent to save my baby’s life.”