Every new mom hopes to have a healthy baby who enters the world right on time. But unfortunately, deliveries don’t always go as planned, and some babies arrive too soon. Preterm birth, which according to the CDC occurs when an infant is born before 37 weeks of pregnancy, affects about one out of every 10 infants born in the U.S. each year. Approximately 50,000 of those infants are born very premature, at less than 28 weeks of gestation.
Sarly Dickinson knew there was a chance her little boy may come early due to complications she experienced during pregnancy, but she held out hope that he would make it to term. Unfortunately, David entered the world at just 25 weeks. Requiring surgical intervention for hydrocephalus, a condition where fluid builds up in the brain, he was transferred to Seattle Children’s Level IV Neonatal Intensive Care Unit (NICU) where he received care for three months. While Dickinson said 25 weeks was much too early, she was thankful David’s birth story wasn’t any scarier.
“My water broke at just 23 weeks and I was terrified because I understood the risks of having a baby that early, including the terrible reality that we may be faced with having to let him go,” Dickinson said. “I immediately went on bed rest and luckily he held out a little longer and arrived two weeks later, weighing a tiny 1 pound, 7 ounces.”
While it was only a few weeks, Dickinson knew that important growth and development occurs throughout pregnancy and that each week, each day matters. The earlier a baby is born, the more likely he or she is to have health problems that may require long stays in a hospital’s NICU. Premature infants born before 32 weeks of gestation are also at a higher risk for long-term health effects related to their brain, lungs, hearing or vision. In the U.S., prematurity accounts for approximately 45% of children with cerebral palsy, 35% of children with vision impairment and 25% of children with cognitive or hearing impairment.
“Thankfully, medical advancements have made us very good at helping these very premature babies survive, but they’ll often face a long road in the hospital after birth and potentially throughout their life,” said Dr. Sandra “Sunny” Juul, division chief of Neonatology at Seattle Children’s Hospital and the University of Washington. “As neonatologists and researchers, our focus now is not only helping these babies survive, but also finding ways to improve their quality of life and neurodevelopmental outcomes.”
For those new parents like Dickinson who may find themselves facing a long stay in a hospital NICU after having a preemie or infant with other medical complications, it can be overwhelming. In order to help parents better navigate this experience, Juul offers the following advice to parents about what to expect.
A lot of equipment and people
A NICU can be intimidating to newcomers. In order to create a soothing environment for infants, the unit is darker and quieter (aside from the occasional beeping or alarm of a machine) than most other areas in a hospital, and there is often a lot of equipment in each room.
“It can be difficult to see your little baby surrounded by big machines, but don’t be overwhelmed,” Juul said. “Just ask your care team to walk you through each machine and explain what it does.”
Juul said parents will have a large and diverse care team that they’ll interact with each day. Teams in Seattle Children’s Neonatology Program, which is one of the top five neonatology programs in the country according to U.S. News and World Report, usually consist of an attending neonatologist who oversees care, nurse practitioners or resident physicians, a neonatal fellow, nurses, respiratory therapists, physical and occupational therapists, nutritionists, pharmacists and social workers.
“There are so many people looking out for and caring for your baby,” Juul said. “Everyone has a particular role and they are there to make everything go smoother for you and your baby.”
Health issues a preemie may encounter
Because all the organs in a preemie’s body are not fully developed, there are certain health issues that may arise during the time they’re in the NICU, said Juul.
The most common issue seen in very premature babies is difficulty breathing, also known as respiratory distress syndrome (RDS), because preemies have lungs that are not yet fully developed. During the hospital stay, many babies who experience breathing difficulties will require some respiratory support. They may also have apnea, or pauses in breathing. Apnea resolves as the baby matures, and a baby’s ability to breathe without support usually improves over time as their lungs get stronger.
Juul said other common health conditions that can arise include bleeding in the brain, a heart murmur, anemia, or low blood count, infections as well as an intestinal problem called necrotizing enterocolitis (NEC).
“Some complications of being born early can last throughout life, but usually problems are most severe early on,” said Juul. “The most important thing as a parent is not to be afraid to ask questions, seek help and advocate for yourself and your family when you’re in the hospital.”
Have a voice and be a member of your child’s care team
Every morning, care teams meet and discuss a child’s care in their room in what are called “rounds.” Parents are invited to participate in these daily conversations, share their insights, ask questions and voice concerns. Juul said that parents are important members of their child’s care team and often know their child best.
“One of the most difficult things for new parents in the NICU is the feeling that they’ve lost control over what’s happening with their baby,” said Juul. “It’s critical that parents stay as present as possible, don’t feel intimidated and ask questions. They’re still the parent and they should have a voice.”
In reflecting on her own experience, Dickinson echoes Juul’s advice and adds, “The NICU can be a really tough place to be as a new mom, but know that the care team is like your family, they care about you and your baby and it’s important to have open communication with them. It makes you feel much more comfortable when you understand what’s going on and what goals you’re baby is working toward.”
Bonding with baby is key
Juul said one of the most important things parents can do is to remember to bond with their baby in the NICU. Parents should touch, hold, talk to and be with their baby as much as possible. When possible, Juul specifically recommends kangaroo care, or skin-to-skin contact between a baby and parent. She said research shows that if a mother does 90 minutes of kangaroo care at least four times a week, it can greatly improve their baby’s health, decrease their chances of having lung disease, and shorten their length of stay in the hospital.
“By simply bonding with your baby, you can do a lot to improve their outcome and future health,” said Juul. “Just talking to your child and having skin-to-skin contact speeds their development and can also increase their IQ.”
The best nutrition for baby: Breast milk
Juul said that most premature babies will at first receive intravenous (IV) nutrition and then, over time, will likely be able to eat on their own. But regardless of the delivery method, Juul said that providing breast milk is another one of the most important steps a mother can take to help improve her baby’s future health.
“It’s amazing how much of a positive impact a mother can have by not only being present and bonding with her baby, but also by providing breast milk if possible,” said Juul. “Breast milk is by far the best nutrition for babies and it can really affect a child’s outcome. Not only does it help these fragile babies develop immunity against dangerous infections or conditions like NEC, some studies show it can also help to increase a child’s IQ by as much as eight points.”
Juul adds that when a baby is eventually able to breastfeed, breast milk is remarkable in the fact that it also helps regulate a baby’s awake and sleep cycles by increasing levels of cortisol, a stimulating hormone, in the morning and melatonin, the hormone that helps induce sleep, at night.
Reaching the end goal: Going home
One of the most pressing questions for many parents in the NICU is, “When can I take my baby home?”
Juul said that in order for a baby to be able to go home, the infant must be able to function properly on their own like any other full-term baby. He or she must be able to regulate their own body temperature, eat and breathe safely. She said since babies go through a natural maturation process, parents can expect this to occur around the time of their original due date.
While it’s an exciting milestone, Juul said going home can also cause anxiety for some parents who may be worried about leaving the safety of the hospital.
“Parents should rest assured that we only send them home when we’re fully confident that their baby is ready and will be safe at home,” she said. “Rest easy and just enjoy your time with your little one.”
Dickinson remembers what a tremendous day it was when David, who is now 7 pounds, 11 ounces, went home for the first time.
“We still have a long journey ahead, but we’re blessed that our little peanut is now thriving at home,” Dickinson said. “It’s incredible to see him growing, breastfeeding and continuing to reach new milestones. We call him our little fighter, our little miracle man and we can’t wait to see what his future holds.”