The baby girl is small. Tiny. She has a big pink flower on her little head, and you’d swear she’s smiling.
Although she was born three months premature, Raela (pronounced RAY-luh) Ruchell Loe has plenty to smile about.
Born Jan. 15 at 2 pounds, 6 ounces – her due date was April 14 – she turned three months old Monday. As of March 27, she weighed 5 pounds, 3.1 ounces, more than double her birth weight.
When I first held her, she was just starting in the 3-pound range. It was like holding nothing, says Raela’s mother, Erika Loe, 24. Now I have a full little baby here. She’s doubled in size. It’s crazy.
Over the decades, the treatments and therapies for premature births have changed dramatically. As doctors learn more about what medicines work with the fewest side effects, premature babies that would have normally died in the 1960s have a relatively easy road ahead of them, experts say.
Dr. James Cameron, a neonatologist with the Lutheran Health Network, points to Patrick Bouvier Kennedy, the youngest child of John F. Kennedy. The infant was born at 34 or 35 weeks (normal gestation is 38 to 42 weeks), Cameron says, and he died of respiratory distress syndrome. Today, Cameron says, it’s unheard of for a baby to die of the syndrome.
Doctors once told families with children born at 23 to 26 weeks that the odds of survival were not good, that even if the baby lived, there would be a poor neurological outcome. However, changes in treatment and medicine transformed the outcome for these babies.
The extremely small, extremely pre-term infants don’t die now, and they don’t just survive. They survive with good outcomes, Cameron says. Your goal is not just to improve the mortality rate but to improve the outcomes where they have a very active life afterward, one where they can participate in all aspects of life with their families, Cameron says.
‘Like a sauna’
Erika Loe had experienced a complication-free pregnancy up until that January day. So when she woke up at 4:30 a.m. with her water broke and dilated to 4 centimeters, she and her husband, Bart Loe, 28, had no idea what happened.
Raela’s first 11 weeks of her life are in the neonatal intensive care unit. There is a narrow couch along one wall, and in one corner of the room are a variety of stuffed animals and books, including some by Dr. Seuss, the inspiration for Raela’s nursery back home in Warsaw. The nursery’s walls are green and tan, with orange stripes and Dr. Seuss decals, Raela’s father Bart says.
Raela sleeps in an open bed in the center of the private NICU room. Her bed is surrounded by machines that monitor and beep. She has a probe on her foot to detect her heart rate and other probes to monitor her oxygen levels and breaths per minute. She used to have a temperature probe, before her temperature became steady. Her first bed had walls, and her parents were not allowed to hold her.
I cried my eyes out, but I understand, Erika says. I got to hold her head and play with her feet.
Inside Raela’s bed when it had walls, there was 100 percent humidity.
It felt like a sauna, Erika says.
Premature babies can lose large amounts of fluid through their skin, Cameron says, and today’s incubators allow doctors to set the humidity at a specific level, which means they can treat the child with a less aggressive form of fluid management, protecting the infant’s fragile lungs, which are often at the limit of viability, or ability to function.
Those are just some of the problems a premature infant can face. Cameron goes through a head-to-toe list:
Blood vessels in the brain that are present at 29 weeks may not be present at 28 weeks or earlier. Those that do exist can break easily, leading to hemorrhaging, which can cause neurological problems.
At 23 weeks, the blood vessels in the eyes haven’t begun to vascularize, and when a fetus is introduced into the higher-oxygenated environment at birth, it can halt the growth of those blood vessels or cause them to grow abnormally, called retinothopy of prematurity. This affects the retinas and was once a cause of blindness, Cameron says. Today, that is now uncommon, as doctors have learned to target specific, lower oxygen levels in incubators.
Eating can be a problem, as babies need to learn how to suck, swallow and breathe. Erika recalls Raela once getting so cozy during a feeding, she forgot to breathe.
At 22 or 23 weeks, a baby’s lungs aren’t structurally ready to breathe. Alveoli, the air sacs in lungs that allow the exchange of oxygen and carbon dioxide, don’t develop until 34 or 35 weeks. Premature infants are at risk for chronic lung disease, or the scarring of the lung, which results from having to breathe before the lungs are ready. To a baby so young, oxygen is toxic. The longer a baby is on a ventilator, the higher the risk of the disease.
The heart of a premature baby isn’t fully developed, and this is treated with a medicine that causes blood vessels to contract. If the vessels are left open, the blood can be absorbed through the baby’s lungs, making them wet, increasing the risk of chronic lung disease.
A premature baby can also have intestinal problems, Cameron says. The bowel may become damaged due to decreased blood supply, according to the March of Dimes, a research organization that helps mothers have full-term pregnancies.
Raela’s bowels were her problem spot. The baby had her first surgery Jan. 23 to reconnect her bowels, Erika says. A week later, she had another surgery to clear out a bowel blockage. She was hooked up to a colostomy bag.
Balancing pros, cons
Over the years, doctors have come to better understand what medications work best for certain ailments, and they have a better idea regarding how long a baby can receive treatment before negative side effects kick in.
For example, Viagra can be used today to dilate blood vessels in a pre-term baby’s lungs. When Cameron was a resident, pre-term babies were often put on a 42-day course of steroids. Today, doctors know that too much steroids can cause lung disease or cerebral palsy.
Before doctors knew the link of oxygen to possible blindness or other eye problems, there was no limit to how much oxygen a premature infant was given.
When Cameron was in medical school, babies never inhaled nitrous oxide. Now, doctors have learned that it can aid the blood flow to a sick baby’s lungs and is used today for the treatment of persistent pulmonary hypertension, high blood pressure in the baby’s lungs that can interfere with breathing, according to the March of Dimes.
All of these medicines have side effects, Cameron says. In all of medicine, it’s trying to balance the pros of using a treatment or therapy with the cons that come with it.
Dr. Moses Olatunji, a neonatologist with Parkview Hospital, says two things in particular have done the most to help with premature births. The first is the use of steroids in the mother. Certain signs can tell a doctor that a mother may go into premature labor, including contractions and a dilated cervix. If this starts to happen, doctors will give the mother steroids, which help the fetus’ lungs and other organs mature faster.
Also related to a baby’s lungs is the use of a substance called a surfactant, Olatunji says. This is naturally produced by a fetus’ lungs to keep them from collapsing. When a baby is born prematurely, doctors can introduce a surfactant to the baby’s lungs through a tube.
That has changed the lung disease that the babies have, he says. Combined with the fact that we are already giving the mother steroids, the lungs mature a little better.
We used to say 25 weeks is kind of like borderline of viability, but what we’re seeing is progressively, less mature babies are surviving.
New therapies also have been introduced to decrease the risk of preterm birth. But sometimes a woman doesn’t know she’s at risk for a preterm birth, like Erika, and Cameron’s wife.
Fifteen years ago, Cameron and his wife were celebrating their fourth anniversary. He had just graduated from medical school and they were due to travel to North Carolina to sign a contract on a new home.
It was a real happy, exciting period the week before, he says.
When the couple arrived home after dinner, she started bleeding and was dilated 5 centimeters (a cervix is fully dilated at 10 centimeters).
Obviously, that’s something you don’t want to hear when you’re not even at 25 weeks, he says.
The couple named their son Caleb, who lived 11 days. He died because of an infection. A toxin attacked his skin, and he experienced fluid loss.
Caleb did well for a few days, Cameron says. He was on an antibiotic that doctors stopped after four or five days to assure the infant didn’t have any negative side effects. Two or three days later, Caleb developed a rash that eventually spread over his body.
The couple later had two more children – Ethan, who is now 14, and Chloe, 11.
As Erika cradles her baby, she is wearing a bracelet with the word hope stamped on it.
Erika and Bart were set up by a friend at work who had an aunt who owned a bowling alley, where Bart works. They will celebrate their fourth anniversary in September.
The couple decided they wanted to grow their family last year. Erika found out she was pregnant in August.
Bart shows off Raela’s tiny items. There’s the diaper she would have used at birth, which is the size of his palm, and the hand-knit hat that wouldn’t fit a baby doll. Bart marvels at how miniature and formed her hands were. He couldn’t get over the definition of her knuckles and nails, so tiny, but so perfect.
Little Raela is no longer surrounded by beeping machines and hooked up to probes that monitor her every breath as she sleeps.
She went home April 4, where she can now sleep in her Dr. Seuss nursery.