New Galilee baby born with rare genetic disorder discharged from hospital in time for Christmas

Even during a global pandemic, miracles can happen.

A local family who could've spent the holidays in a hospital in Baltimore is grateful to be at their home in New Galilee with their newborn baby, Matthew. 

Matthew was still in utero in the summer when the Brommer family found out he had Nager Syndrome, a rare genetic disorder characterized by craniofacial malformations which can include facial abnormalities such as a small, setback jaw. 

Due to this diagnosis, the Brommer family was set to move to Baltimore during the 37th week of mom's pregnancy so Matthew could be delivered at Johns Hopkins Hospital. But when mom's water broke more than a month early in mid-August, everything changed. 

It was a foggy day when Lorraine Brommer's water broke. She went to West Penn Hospital, expecting to be transported to Baltimore, where she was seeing a specialist. But she was told she couldn't be sent via helicopter due to the weather. 

West Penn and Johns Hopkins have a partnership, and when baby Matthew was diagnosed with such a rare genetic disorder as Nager Syndrome, Johns Hopkins was the best in-network hospital to properly deliver their high-risk baby.

With Baltimore no longer an option, Johns Hopkins contacted UPMC Magee-Womens Hospital, and Brommer was taken to Magee right away.

Doctors, surgeons, nurses and technicians from throughout UPMC all came together within five hours to discuss plans for delivering baby Matthew, she said.

Brommer said when she was lying in a hospital bed at UPMC, she knew she was in the right place.

"Something in me was like, 'I can't leave this building,'" she said. "Everything they've done in five hours, I don't feel comfortable going anywhere else. Something instinctive told me, 'Don't leave.'"

And she didn't. She trusted the medical professionals with Magee, who specialize in a variety of fetal surgeries and procedures, to take care of her and her baby. 

While at Magee, Dr. Stephen Emery, director of the Center for Innovative Fetal Intervention at UPMC Magee-Womens Hospital, spoke with Brommer about the baby's diagnosis. He collected her records and he, along with many other teams with Magee and UPMC Children's Hospital of Pittsburgh, made a plan to do an EXIT procedure.

According to UPMC's website, "ex utero intrapartum treatment (EXIT) is a highly specialized, multidisciplinary surgical procedure used to deliver babies who have been diagnosed prenatally with various airway anomalies leading to airway compression or blockage, making a normal vaginal birth or traditional caesarean section delivery unviable for the baby."

Matthew's airway was compressed and small, meaning if he would have been delivered naturally, he likely would have died. 

So, the teams got to work in the operating room. With around 30 people in the OR, mom was given anesthesia, and surgeons cut open her abdomen, essentially conducting a caesarean but only partially delivering the baby. 

"Once we deliver up to the shoulder, the head, left arm and shoulder, we put an IV in the left hand and give the baby a shot of pain medication and paralytic medication, and the ENT works on getting the airway," Emery said.

Dr. Allison Tobey and her team stepped in to do a tracheostomy, surgically securing the baby's airway. 

In a situation like this, conducting an EXIT procedure is more ideal than a traditional C-section or vaginal birth, said Tobey, assistant professor of Pediatric Otolaryngology/Head and Neck Surgery, co-director of the EXIT Education Program at UPMC Children’s Hospital.

"You deliver the head and then pump fluid to replace the embryonic fluid to keep the uterus expanded. The placenta will stay on the wall of the uterus and will continue to provide the baby with oxygen and nutrients as before," Emery said.

EXITs are rare. While Magee delivers 10,000 babies a year, they only conduct one or two EXITs during that time. 

"It was definitely worth doing the EXIT," Emery said. "The baby wouldn't have been able to breathe without it."

Brommer said she can't imagine delivering Matthew without UPMC. 

"The level of care we got, and the comfort. Every piece of our delivery and transition, I mean we wouldn't trade it for anything," she said. "It's hard to comprehend that that couldn't have been the plan from the beginning."

The whole process was incredibly visceral, Brommer said. From Matthew's diagnosis to transferring to Magee to the EXIT procedure, it was more than words can describe.

Matthew's early arrival came as a blessing in disguise.

"Stress and anxiety turned into, he’s coming early! But if he wasn't coming early, we’d be hundred of miles from home," Bronner said. "Now we get to stay close to home and have the same doctors.

"It's so weird to feel grateful for such a bad situation. All the build up, the scariest situation of our life and it wasn't scary all of a sudden. It was visceral –– so scary but so relieving," she said.

The family has since switched Matthew's doctors over to specialists at UPMC Children's, where Matthew is able to receive treatment closer to home when needed. 

Mom has recovered well and baby Matthew was released from the hospital last Monday, just in time to spend the rest of the holiday at home.

It's been a long road for the Brommer family. Baby Matthew was in the NICU at Children's Hospital for 71 days, lived in the Children's Home of Pittsburgh for five weeks, and then was periodically back in the hospital for a few days at a time. During that time, parents Lorraine and Matthew received training from UPMC on how to support their little one once at home.

Baby Matthew was originally supposed to be discharged around Thanksgiving, but mom and dad were diagnosed with COVID-19 and had to quarantine from him for 16 days. Matthew was then sent back to the hospital with an unrelated respiratory virus before being released on Monday.

The infant now is thriving at home, and Lorraine Brommer said they're excited to be making new Christmas traditions with their little family.

To celebrate the holiday, they've been watching Christmas movies together, putting up their Christmas decorations, and Matthew has been wearing his Christmas onesies, she said. 

"I have no words for how excited we are to have him here," Brommer added.