Several months ago, Amy Montoya held her newborn in the Neonatal Intensive Care Unit (NICU) of Ann & Robert H. Lurie Children’s Hospital of Chicago, exuding a calm confidence that belied two life-threatening crises in her pregnancy.
“While working as an underground coal miner near our home in southern Illinois, I got a call that Amy was being taken into surgery with internal bleeding,” remembers her husband, Daniel.
While visiting family in northwestern Indiana during her eighth week of pregnancy, Amy learned that she had a heterotopic pregnancy, a rare condition in which one embryo is viably implanted in the uterus, and another outside of it. At Franciscan St. Margaret Hospital, Amy lost the fetus in her fallopian tube, while the other tiny fetus clung to life as Amy received blood transfusions and fought to survive with 50/50 odds.
“Dr. Padmaja Sanaka, our obstetrician, saved them both that day,” says Daniel.
Fast forward to six weeks before Amy’s due date: Dr. Sanaka noticed excess fluid around the baby in her ultrasound. A referral to high-risk obstetrician Thomas Losure, MD, ensued; he immediately referred them to The Chicago Institute for Fetal Health.
There, in one of the most experienced and prolific places for fetal MRIs, the baby’s diagnosis was confirmed: a left congenital diaphragmatic hernia. Life-threatening if left untreated, this condition requires a complex surgical repair soon after birth.
“We view the care and counseling of a pregnant mother whose fetus has been diagnosed with a birth defect as an emergency,” says Christopher Talbot, MD, a seasoned obstetrician and the former physician liaison for The Chicago Institute for Fetal Health. “We aim for the entire multidisciplinary team to meet the family as quickly as possible, with coordination of appointments all in the same day.”
“The hospital’s fetal health program has over 40 years of experience in caring for pregnant mothers who are expecting a child with a complex condition like congenital diaphragmatic hernia. As the region’s oldest and most comprehensive program, we are prepared for the sickest babies, who may need all of our life-saving therapies and multiple specialists,” says Erin Rowell, MD, a pediatric surgeon and medical director of the program. “In some of those cases, we bring the operating room team to the baby’s NICU bedside to spare the newborn from traveling.”
When Leia was born on March 12 at Prentice Women’s Hospital, the medical team in the delivery room was prepared to provide life-saving interventions and treatments, and prepare her for transfer to the Lurie Children’s NICU for more advanced treatments as needed, and eventual surgery.
Daniel recalls, “I crossed the bridge, went to the NICU, and Leia’s nurse explained my daughter’s care plan and next steps. The level of communication was impressive; everything was so well coordinated.”
A few hours after delivery and wheelchair-bound, Amy, too, crossed the bridge from Prentice.
“I wasn’t expecting to get to hold Leia for weeks,” Amy recalls. “The nurses taped things down and dragged things over, making sure that her breathing tube and IVs were in place so that they could carefully place her in my arms.”
Once settled, Amy and Daniel received good news: Leia qualified for a thorascopic repair.
With expertise that spans the gamut of severity, the Lurie Children’s team is also prepared for babies, like Leia, who are doing better than expected and can undergo new, innovative minimally-invasive repair of their diaphragmatic hernia.
“Fortunately, Leia’s condition was stabilized early. We transported her from the NICU on the 14th floor to the operating room on the 7th floor, where a seven-member team that included experts in pediatric anesthesia, pediatric surgery and OR nursing worked together to help her safely through the minimally invasive repair procedure,” says Dr. Rowell. “Then, she continued to amaze us with her recovery–the breathing tube was removed in only a few days, and she was eating by mouth within one week of birth.”
Although the Montoyas had been prepared for Leia to spend up to three months recovering in the NICU, they were able to take her home to meet her big brother, Jackson, after only 10 days. Knowing that an Advanced Practice Nurse would be in touch by phone to support the family’s follow-up care plan made the transition easier.
Holding Leia close, Daniel and Amy reflected on their experience.
“We talked about what it would be like to be a doctor at this hospital and be able to help these children,” Daniel recalls. “We even discussed the donations that made it possible to create it. How fantastic is it to be able to create a place that’s welcoming for families experiencing something tragic and be able to provide them with hope?”