Tiny steps of healing: Margo's story

Savanna and Daniel Buller of Lake Charles, Louisiana were thrilled to find out that they were expecting their fourth child. Savanna’s previous pregnancies were normal and problem free. As a labor and delivery nurse by training, and having had three healthy, full-term pregnancies before, at twenty weeks when she began to feel different, she knew something was wrong.

“I kept getting headaches, and I was really swollen,” shared Savanna. “My doctor checked my blood pressure, and it was elevated, so he started me on medicine.” Within three weeks, Savanna had to be admitted to the hospital for high blood pressure to be monitored closely.

By the time she hit 25-weeks gestation, Savanna was diagnosed with severe preeclampsia. When her symptoms weren’t responding to medication, she knew that there would be trouble ahead, and that this birth would be unlike her others.

“The day Margo was born was scary,” remembered Savanna. “When my OB doctor told me I would have to deliver at 25 weeks, I was in denial. I thought, ‘there’s no way I’m about to have a 25-week baby.’”

When the doctor showed Savanna her blood work, along with seeing her concerning blood pressures, she knew it was time to deliver for both her own safety and baby Margo’s. Through Savanna’s background as a nurse, the Bullers knew what they were getting into when they found out that their baby would have to be born 15 weeks early. Daniel raced to the hospital from work, and baby Margo was born via c-section that day.

Weighing only 595 grams, or a little more than one pound, Margo was intubated right away and taken to the Neonatal Intensive Care Unit (NICU) at Lake Charles Memorial Hospital where Savanna delivered. After Margo pulled out her own breathing tube in an impressive show of strength, the NICU team initially allowed Margo to breathe on her own, but within a matter of a few hours she needed respiratory support again.

“I remember thinking to myself, oh this girl is strong and is a fighter,” shared Savanna. In the early days in the NICU there, Margo slowly went from stable to being very sick. The Lake Charles NICU doctors continued to care for Margo, but in the following weeks, she became sicker. They became extremely concerned when Margo’s abdomen began to turn blue and swollen all while she was struggling to breathe. Her care team then made the decision to have her transported to Children’s Hospital New Orleans when Margo was 20 days old, so that she could be in the care of the hospital’s Level IV NICU team and in a facility with a comprehensive pediatric surgery team.

Margo was taken to Children’s Hospital aboard Abby, the hospital’s medical helicopter. She was in the air for an hour and 22 minutes with Children’s Hospital’s skilled pediatric flight team, while her parents made the nearly three-and-a-half-hour drive. As Savanna and Daniel came to grips with the reality that their weeks old baby was very sick, they discussed the possibility that Margo could have Necrotizing Enterocolitis or NEC, which as the Bullers knew was a disease that is often fatal for babies, especially premature babies like Margo.

“I remember saying as long as she doesn’t have NEC, she’s going to be okay,” said Savanna. “But I knew when she was showing signs and symptoms of having NEC that it wasn’t good. I thought when we were leaving Lake Charles that we were going to New Orleans to say goodbye.”

When the Bullers arrived at Children’s Hospital, they were grateful to see their baby was still alive and were introduced to Margo’s new care team, including Dr. Brian Barkemeyer, Medical Director of the Children’s Hospital NICU. The Bullers knew that baby Margo had been through so much in her short life, and looked to the care team for guidance on what their next steps should be. Dr. Barkemeyer assured the couple that as long as Margo was fighting and trying to live, that her Children’s Hospital care team would keep fighting with her.

Savanna’s worst fears were realized when Margo was soon diagnosed with NEC. NEC is inflammation of the intestines that occurs most often in premature babies and can be life threatening. Margo was intubated and doctors decided surgical intervention would be needed immediately because part of her intestine began to necrose or die. Children’s Hospital Pediatric Surgeon, Dr. Jessica Zagory, was brought on to Margo’s case and performed a procedure to relieve Margo’s abdomen of the infection that was causing damage. The days after her first procedure were touch and go for Margo as she remained in critical condition.

“Savanna, Daniel, and I had long talks about what we wanted for Margo, whether we wanted to proceed with a big operation or to give her comfort care,” recalled Dr. Zagory. “During that time, Margo really showed us how much strength she had, and we made the very difficult, but we think, the right decision to proceed with a big operation for Margo on September 20.”

Dr. Zagory performed an exploratory laparotomy on Margo, in which she removed the part of the intestine that was dead, and created an ostomy, which allowed Margo to grow bigger and stronger before her next surgery – which is exactly what she did. She underwent a third procedure in January to analyze how much healthy intestine Margo had left, and to begin to put it back together. Although she struggled through the recovery from the procedure, Margo continued to amaze her parents and her care team as she persisted and grew stronger.

Although the odds have been stacked against her from the moment she was born, Margo has continued to break through every milestone that has been set for her. Today, she is feeding by mouth, can breathe on her own, and can be held by Mom and Dad. Weighing in at more than eleven pounds, Margo still has a long road to recovery and more surgeries in her future, but with the love and support of her family, doctors, nurses, therapists, and her entire care team, Margo is well on her way to finally being able to go home after eight months at Children’s.

“It’s like the hours turned into days, and the days turned into weeks, then months, and she’s still here.” shared Savanna. “This place and these people have been so amazing. It’s given us so much hope.”

Over the more than eight months that she has fought for her life in the Children’s Hospital NICU, Margo’s mother has recorded her growth with footprints that adorn the walls in her room to remind everyone who enters just how far she has come.

“Our goal is for Margo to grow big and strong and be the best little sister to her three older brothers and sister,” shared Dr. Zagory. “I know she has a big family at home, and I can’t wait to see her there, making a lot more little footprints in the future.”