At 1 pound, 14 ounces, Millie defies all odds
At many moments, you could have flipped a coin. Would Millie live or die?
Born at just 25-weeks gestation, the 1 pound, 14 ounce Memphis premature infant spent the first six months of her life in the Neonatal Intensive Care Unit (NICU) at Le Bonheur.
Her 172-day journey, that at times included a team of 85 Le Bonheur caregivers, proved Millie is a little fighter.
Carrie Galphin’s first pregnancy seemed very normal until she went into labor at 25 weeks. The school teacher and dance instructor was home when the bleeding started. Her husband, Patrick, was 700 miles away in South Carolina on a business trip. Carrie drove herself to Methodist Le Bonheur Germantown Hospital where a friend met her.
The physicians there tried to stop labor, but they all knew the Galphins’ daughter would be born within a few days. Before Millie was born, Carrie received one dose of steroids administered to help Millie’s lungs develop. Once Patrick was by Carrie’s side, Millie made her arrival just 24 hours later on April 11.
At just 1 pound, 14 ounces, Millie was rushed from the delivery room to the NICU at Methodist Le Bonheur Germantown. At 13 inches, her body was barely longer than a ruler. On day five, things became more serious. At 10 p.m., Millie’s bowels ruptured. The perforation was caused by necrotizing entercolitis (NEC), a condition that occurs when the lining of the intestinal wall dies. NEC is one of the most serious intestinal diseases for premature babies.
“We had gotten comfortable at Methodist Germantown. We started to establish a routine. It turned our world upside down yet again,” Carrie said.
Patrick and Carrie followed the Pedi-Flite ambulance from Germantown to Le Bonheur Children’s Hospital. They were taken to the NICU where they waited to see their daughter.
“We were more scared than anything. We had no idea what our future looked like at that point,” Carrie said. “I wasn’t sure she was coming home with us.”
At 3 a.m., Millie had her first of seven surgeries. Surgeons emergently put a drain into her abdomen to remove fluid. Once she was stable enough for another surgery, part of her diseased intestines was removed from her body. Surgeons left a hole in her abdomen for 12 weeks while she recovered and healed.
That first night at Le Bonheur began a six-month journey filled with highs and very low moments. Beyond her intestinal issues, Millie’s heart had a vessel that didn’t close on its own as it should. The opening was also making her premature lung disease worse, which meant she needed a ventilator to breathe. Millie was too fragile to move to the operating room, so her room in the NICU, once again, became a sterile environment for surgery, and cardiovascular surgeons closed the hole in her heart. Her parents held her for the first time when she was 15 days old.
“The doctors told us when she was born, ‘It’s going to be a roller coaster.’ It was the biggest roller coaster of my life. She’d have a great day and then she’d have a great day and then she’d have a horrible day. Then she’d have a great day. It was up and down and up and down for months,” Carrie said.
Neonatologist John Ferguson, MD, remembers those difficult days. Not only was Millie a very small premature baby, but she had bronchopulmonary dysplasia, a chronic lung disease, complicated by pulmonary hypertension. She suffered from extreme changes in her oxygen levels.
“One weekend she got a tracheal infection and was extremely critical. It was touch-and-go for a bit,” Ferguson said. “I remember having to frequently go back to her bed to check her oxygen saturation and blood gases and make sure she was sedated enough that she wasn’t agitated. She was on full support, and there was some concern whether she’d survive the weekend. It was a difficult weekend for everybody.”
For parents with no medical training, these were scary moments. Carrie remembers one of the worst days.
“Our room – it was like a fire. There were nurses and doctors everywhere. We had no idea what was going on. We learned this wasn’t good. Her lungs were not working. Dr. Ferguson worked for what seemed forever and got her stable through the night,” Carrie said.
Carrie called Patrick from the NICU. Come quickly, she said. As he made his way to Millie’s room, he saw one of the chaplains leaving.
“We’d been in the NICU long enough to know what the chaplain coming out of your room meant. We realized that day how bad off we were,” he said.
The Galphins remember what Neonatologist Divya Rana, MD, said after one of those scary moments.
“She said, ‘This is the last thing we can do for Millie. If she can make it through the next six hours, we feel this is successful, and she’s going to make it past this. But she may not.’ It was a real possibility that she wouldn’t,” Carrie said.
Millie made it past those six hours and the night. She kept fighting, and her parents held onto hope.
For a while, every time someone touched Millie, her oxygen saturation levels would drop. The medical team would have to help her breathe again and again through these episodes.
“I had to take it one day at a time. If I didn’t take it one day at a time, it got to be really overwhelming,” Carrie said.
Carrie kept a notebook while Millie was in the NICU. She listed the key information from rounds each morning – the day’s issues, treatment plans, medications and the team members. During one of Millie’s hardest weeks, Carrie listed 85 different people on Millie’s care team. Beyond the neonatologists, there were nurses, nurse practitioners, pharmacists, respiratory therapists, physical therapists, speech language pathologists, dietitians and more.
“By the time we left, we think every nurse in the NICU cared for Millie. We owe everything to Le Bonheur,” Patrick said.
It takes a large team of people to care for kids like Millie, Rana says. As the only Level IV NICU in the region, Le Bonheur cares for the most premature and seriously ill babies from West Tennessee, North Mississippi and East Arkansas. Babies admitted to Le Bonheur’s NICU are born at 31 birthing hospitals across the region and then travel by ambulance or helicopter with Le Bonheur’s Pedi-Flite transport team. The 60-bed NICU is staffed by board-certified neonatologists and nurse practitioners 24 hours a day. Patients have access to physicians from more than 40 subspecialties including several surgical specialties, cardiology, neurology, gastroenterology, nephrology, genetics, pulmonology, endocrinology and infectious disease.
“Le Bonheur is the place where the sickest of the sick come,” Rana said. “We get the babies who can’t be supported in other hospitals. They come to us needing emergent surgeries or procedures or a higher level of care. To give that level of support it takes a team of people. It takes that level of care to achieve the outcomes that we want.”
At the helm of Millie’s team are her parents. The Galphins say the medical team encouraged them to be involved with every possible aspect of Millie’s care.
“The team at Le Bonheur was very patient with us. They taught us a lot. They made sure we understood everything that was going on with our daughter. A lot of things were happening very quickly,” Patrick said.
Parents are encouraged to be part of the medical team’s rounds each morning when the team arrives at each baby’s room.
“We want parents to be a part of the care team,” Ferguson said. “It creates a bond between the staff, parents and their baby. Everyone seems to benefit. You’re making life and death decisions. Parents always appreciate when you put them in the picture. That’s one of the good things about Le Bonheur.”
As Millie’s body began to grow and heal, the family looked forward to taking their daughter home. Millie needed to gain weight and breathe with a minimal amount of oxygen.
The last two and a half months were focused on feeding issues. Because Millie had weak feeding skills, she received some of her food by feeding tube. The dietitian worked to find the best formula for Millie’s sensitive stomach and intestines.
Millie went home on Sept. 29, weighing 7 pounds, 7 ounces.
“It was so wonderful and so sad at the same time,” Carrie said. “We felt like we were leaving friends, but we were so glad to be bringing her home.”
Carrie says life at home has been wonderful. Millie now weighs 15 pounds, 12 ounces and enjoys tummy time, playing in her jumper and giving her parents big smiles. She celebrated her first birthday on April 11.
While Millie’s NICU journey ended in September, Le Bonheur will be part of her life for many more years. She had surgery in February to remove a hemangioma (a birthmark of extra blood vessels) from her chest. Millie continues to see specialists in three clinics – Newborn Follow Up, G-tube Feeding Clinic and Children’s Intestinal Rehab Clinic (CIRCLe). She also sees a pulmonologist, audiologist and ophthalmologist.
“We have so many doctors following Millie. I feel like if we had an issue, they are going to catch it really quickly,” said Carrie. “That is comforting to me.”