Families often forge special bonds with neonatal intensive care nurses, many of whom become extended family for new parents whose fragile premature infants can sometimes spend months in the hospital before going home.
For Tom and Aileen Avigliano of Holyoke, that nurse was Stacey Thomas, RN, who became their daughter Harriett’s primary nurse in the Davis Neonatal Intensive Care Unit (NICU) at Baystate Children’s Hospital. Thomas is responsible for helping organize care for babies in the NICU from their first day to the day they are discharged home.
Thomas says she has stayed in touch with a couple families over the years, but became very close to Tom and Aileen during their NICU ordeal.
“I was visiting them shortly after Harriett was discharged from the hospital. We were just hanging out together, having fun talking. I was enjoying my visit with Harriett, when Aileen and Tom said they wanted to ask me something. When they asked me to be Harriett’s godmother, I was floored. I had never been asked to be a godmother and I started to cry. I told them I would be honored,” Thomas says.
It all began for baby Harriett when she was born at just 25 weeks. She weighed a little over 1 pound and spent the first three months of her life in the NICU.
Aileen had diagnosed with HELLP syndrome when she was pregnant with her first child, Scarlett. HELLP is a series of symptoms, including hemolysis, elevated liver enzymes, low platelet count.
“It was a surprise to find out that I had HELLP, and the only sign was swelling in my legs, which developed a week before I had Scarlett. Tests showed that everything, otherwise, was fine and I delivered Scarlett at full term,” she explains.
But that would not be the case during Aileen’s pregnancy with Harriett.
HELLP RAISES PROBLEMS
HELLP syndrome is a life-threatening pregnancy complication that often begins in the third trimester of pregnancy. Women with HELLP may have:
- Bleeding problems
- High liver enzymes, which can result in an enlarged liver
- High blood pressure, which can lead to stroke
For Aileen, her concerns were much more than swollen legs in her second pregnancy. “I began to have pain on my side and back, and was feeling sick to my stomach. I called my ob/gyn who thought it might be the flu. However, he recommended going to the Women’s Evaluation and Treatment Unit (WETU) at Baystate Medical Center as a precaution.”
WETU nurses and nurse midwives specialize in obstetrical and gynecological urgent care.
“They did some blood tests and saw that my liver enzymes were elevated. Knowing my history with HELLP during my first pregnancy, they decided to admit me to the hospital
and keep a watch on how I was doing. I was fine on Saturday and Sunday, but on Monday afternoon, well, that is when things began to get worse,” she explains.
It was Dr. Fadi Bsat, a maternal-fetal medicine expert in Baystate’s Department of Obstetrics & Gynecology who would have to deliver the critical news to Aileen and her husband. Aileen’s liver was in danger of rupturing. They would need to deliver her baby immediately by Caesarean at just over six months into her pregnancy.
WHAT IS HELLP?
HELLP, hemolysis, elevated liver enzymes, low platelet count, is a serious condition that can harm both mom and baby. It often requires premature delivery.
“HELLP syndrome is a severe form of preeclampsia, which is linked with serious side effects if it’s not promptly managed. One of these complications is bleeding around the liver, which in medical terms is called subcapsular hematoma. While it is uncommon, subcapsular hematoma is life threatening, even when appropriately and promptly managed,” explains Dr. Basat.
“I did see Harriett quickly after my Cesarean, but I was so groggy that I can’t even remember. The next day I needed a blood transfusion as part of the complications from having HELLP, so it wasn’t until Wednesday that I really got to see Harriett,” Aileen says.
When she first saw little Harriett in the NICU, Aileen said she was shocked. “I was nervous over what Harriett would look like….I had no idea what a premature baby looked like, let alone one born some two months early. When I saw Harriett, I was shocked, not at how small she was—but pleasantly shocked at how developed her tiny body already was, it was like seeing a mini-baby,” says Aileen.
Even Scarlett, who was just 2 years old at the time, wasn’t troubled when seeing Harriett in the NICU. “Scarlett wanted to see her new baby sister, so Tom took her to the NICU to meet her. When she came running back into my room at the hospital, Scarlett’s only words were, ‘My baby is so tiny,’ and I thought it was awesome that she didn’t even notice all the wires and IVs attached to Harriett. So, every weekend after that, she would come to the NICU with us, and even helped to give her sister a bath,” shares Aileen.
CARING FOR PREMATURE BABIES
Premature babies—defined as being born too early, before 37 weeks—can have both short- and long-term health problems that affect them throughout their lives. Almost 1 out of every 10 infants born in the U.S. is born prematurely, called a preemie.
Important growth and development happens throughout pregnancy, and especially in the final weeks. Because they are born too early, preemies weigh much less than full-term babies. They may have health problems because their organs have not developed completely.
During their first weeks of life, complications may include anemia/jaundice, infections, respiratory distress, hypothermia, gastrointestinal and metabolic issues, and brain and heart problems.
According to Dr. Bsat, baby Harriett had many of the problems that typically affect preemies at this early gestational age, including respiratory difficulties and difficulty feeding and maintaining a normal temperature.
In addition, Harriett had a patent ductus arteriosus (PDA). The ductus arteriosus is a fetal vessel that typically closes after birth, once the baby’s lungs start to function outside of the mother’s womb.
“In Harriett’s case, this blood vessel remained open, which lead to abnormal blood flow between the two major blood vessels that carry blood from the heart to the lung and the rest of the body. It affected how she processed oxygen,” explains Dr. Bsat.
Medications are often the first choice of treatment to close a PDA, followed by surgery if the medicines don’t work—which was the case for Harriett. While Baystate Children’s Hospital has a talented staff of pediatric cardiologists, some preemies who need heart surgery go to Boston for surgery.
“I remember being at the hospital in Boston for about a week during Easter, while Harriett was recovering from a surgical PDA ligation to close the open duct. Shortly afterward, we returned to the NICU at Baystate, where she would continue to grow and thrive,” Aileen recalls.
ONGOING CARE IN THE NICU
“After her surgery, Harriett was like a different baby. She was breathing better and making huge strides, then an infection set in and she began taking steps backwards. It wasn’t good. Our calls to the NICU each morning to find out how she was doing were torture, worrying what we were going to hear.”
“They did a spinal tap on Harriett to determine what was causing the infection and she was put on antibiotics. Soon, our morning calls turned to joy. Nurse Shannon Griffin told us Harriett was a different baby again, that the antibiotics had worked and she literally turned around in a day,” Aileen says.
A urine culture came back positive for cytomegalovirus (CMV). Harriett’s liver was also inflamed, and it was not clear if this was caused by the CMV, her surgery, or another reason, explains Dr. Bsat. CMV can infect the baby’s liver, brain and other organs.
“Fortunately for Harriett, imaging of her brain did not suggest that it was affected by this infection,” says Dr. Bsat.
“Few people really know what you go through—the stress of having a baby in the NICU. The nurses were a super support system for us and we knew Harriett was in good hands in the NICU,” says Aileen. Her and her husband would visit with Harriet as often as possible during the day, typically before work, at lunchtime, and in the evening.
“Each evening became more like hanging out with friends and family. The nurses knew we were physically drained and very upset at times, and they assured us that was entirely normal for parents with a baby in the NICU. They would often talk with us about normal, everyday things to help keep our minds off what Harriett was going through,” she shares.
“Stacey was Harriett’s primary nurse, and she became my go-to person. The doctor would tell me something, and then I would discuss it with Stacey. She would answer my questions truthfully. She was just always there for us. Even when Stacey went on vacation to Mexico for a week, she checked in to see how Harriett was doing.”
NICU NURSE, NOW GODMOTHER
As for the christening held at St. Patrick’s Church in South Hadley, nurse Stacey describes it as an “awesome” experience.
The longtime NICU nurse, who has spent the past 17 years of her nursing career in the Davis Neonatal Intensive Care Unit at Baystate Children’s Hospital, developed a love for neonatal nursing during a labor and delivery rotation as part of her nursing curriculum at the University of Rhode Island.
“I loved being in the NICU, and I was lucky enough to work in one right out of college, which not many nurses are able to do,” she explains.
“It’s not just about taking care of these young infants. It’s also about helping families cope with what can be a very traumatic and emotional experience. Parents will have good days and bad days, and you need to be there for them and provide support. You also need to make them feel as if they are doing something for their child—like simply changing their diaper—until their baby is big enough to be held by them,” she adds.
Both Aileen and Stacey agree that to see this active 20-pound little girl today, you would never know what she went through during her first few months of life.
“She looks normal and healthy in every respect, and she has been free from many issues that can affect preemies such as eye, gastrointestinal and respiratory problems,” says Aileen.