“He’s the earliest-born baby I’ve ever cared for”
His name is Percival Spencer and his parents call him “Doodlebug.”
Others call him a miracle.
Born at just 22 weeks, he is one of the few infants who have survived at such a young gestational age and did so because he was born at a hospital with the resources and the commitment to treat such a premature baby. A gestation period of 40 weeks is considered full-term and nearly all infants born at 22 weeks don’t survive.
“I think it’s miraculous he’s still alive and doing as well as he is,” said Percival’s pediatrician, Leif Norenberg, MD of Briarpatch Pediatrics in Sandwich, Yarmouthport and Nantucket.
Percival, son of Courtney and Colin Spencer of Buzzards Bay, was born on Jan. 13, 2019 in Anchorage, AK, while Colin, a first-class aviation maintenance technician in the Coast Guard, was stationed in Kodiak, AK. The tale of his birth and battle for life still amaze his parents and those around him.
Now, nearly 19 months old, Percival is a wide-eyed, curious child, with a ready smile, who was eager to show off his favorite toys to a recent visitor at his home on Joint Base Cape Cod, where the family now lives. He remains on oxygen for his undeveloped lungs but has met the developmental milestones expected according to what his full-term birth would have been, said Courtney.
After four years of unsuccessfully trying to get pregnant, the Spencers opted for fertility treatments. Courtney, 30, suffered a miscarriage two years before finally becoming pregnant again, this time with Percival.
When the Spencers found out from ultrasound exams that they were having a boy, they decided to name him Percival. The name appealed to Courtney because of its literary quality (she is an avid reader), and to Colin because it is an old family name. Percival Spencer, who was Colin’s great grandfather’s cousin, was an early aviator and inventor of machines and firearms.
About six weeks into her pregnancy, Courtney started bleeding and doctors at the hospital in Kodiak determined she had a small tear in the placenta and she was placed on modified bedrest. She was in school at the time, studying to become a nurse. After eight weeks, the placenta healed, and from 12 weeks to 17 weeks of her pregnancy, everything went fine, she said. But, on the day of her final exam for anatomy and physiology, she woke up and knew something wasn’t right.
“I called Colin and said, ‘we need to go to the ER.’”
As the Emergency Room staff was preparing her for an ultrasound, the technician stopped, ran to the door and yelled for a doctor. The placenta, including Percival’s tiny legs, was bulging through Courtney’s cervix into her vagina. The team prepared her for an emergency flight to Providence Children’s Hospital in Providence, AK, in the Anchorage area.
“The problem was it was December 11….in Alaska,” said Courtney. “At first Kodiak had bad weather and then Anchorage did,” she said, which prevented the plane from taking off. After about 12 hours, they were finally on their way.
“We got to Anchorage and it was a whiteout,” said Colin. “I was blown away by how good the pilot was. I’m a pilot, also, and these were conditions I would never fly in.”
After arrival at Providence Children’s Hospital the obstetrician on call diagnosed Courtney with an incompetent cervix, which means it was not able to hold the growing fetus into the uterus. The doctor explained that a procedure was necessary to sew the cervix together (known as a ‘rescue cervical cerclage’) for the duration of the pregnancy, but when a maternal fetal physician was called in, she determined that Courtney’s cervix was extremely thin and there may not be enough tissue to sew together.
Courtney was crushed.
“My whole thing was that (Percival) was fine. It was my body that was failing him. That’s the part that was hard to wrap my head around,” she said.
The doctor offered the Spencers two options, both of which were high risk. They could do nothing and hope that Courtney didn’t go into premature labor, or try to surgically sew the cervix, with the risk of puncturing the placenta and putting her into labor.
“So, (the doctor) said, ‘we could put you in a hospital room and hope for the best or, if the surgery works, you could have a perfectly happy, healthy kid,” said Courtney. “It took about a minute for us to decide to try surgery.”
Colin’s resolve was just as strong.
“It felt like not trying anything would be letting (Percival) down,” he said. “We had already been through so much and we thought: we haven’t come this far to let go.”
The surgery was performed on Dec. 12, 2018, Colin’s 35th birthday, and took several hours. When Colin finally saw the doctor standing before him in the waiting room, in bloody scrubs and smiling from ear to ear, he knew it had been successful, he said.
With the immediate danger over, Courtney now faced full bedrest for the rest of her pregnancy, in order to prevent labor from starting prematurely. She did not need to remain in the hospital, but the doctors told her she would have to stay in Anchorage. So, the couple moved into Fisher House, a Coast Guard facility for active duty and veterans and their families who need housing while undergoing medical treatment. They would end up living there for more than seven months.
Over the weeks of Courtney’s bedrest, the couple grew even more attached to their unborn son, but the inevitability of his birth was still far from certain. Courtney’s convalescence was anything but smooth, as the least movement threatened to send her into early labor.
“Every week we had moments of sheer terror,” Colin said.
Then, at 22 weeks, Courtney was admitted to the hospital with a fever. Had it been one week later, the hospital would have offered steroids to strengthen the baby’s lungs, a normal occurrence at 23 weeks in a high-risk pregnancy. She was scheduled for this injection the following week, she said.
Courtney was discharged from the hospital soon after her temperature registered as normal again, but the next day she woke up bleeding and in labor. She called Colin, who was at the Coast Guard base at the time, and he drove the Ford Fiesta rental “like a rally car through Anchorage in the snow,” he said.
Courtney quickly underwent a C-section because brain bleeds in premature infants delivered vaginally can cause cerebral palsy (which is still a risk with a C-section). Percival, however, was delivered without having suffered any brain bleeds. “The doctors were amazed,” she said.
During the delivery, the physician found that a necrotizing infection was raging in Courtney’s placenta and Percival would likely not have survived in utero another week.
“They couldn’t stop my labor and we’re glad they didn’t,” said Courtney.
Percival’s fight for life would now take place in the neonatal intensive care unit (NICU) at Providence Children’s Hospital. Weighing just 1 pound 3 ounces, he measured 11 inches. His chances of survival were still slim, the doctors told Courtney and Colin.
When Colin went to visit his newborn son in the NICU for the first time, he didn’t know what to expect.
“They only told me ‘you can come and meet your son; he’s in Room 219,’” he said. “So, I’m thinking I’m either going to go meet him and say goodbye or I’m going to meet him, and this is the start of a huge journey, which it was.”
Colin walked into the room and Percival was wrapped in a clear plastic bag. Colin cautiously put his finger out to his son and Percival grasped it in his tiny fist. “He squeezed so much harder than I thought he could,” Colin said. “As soon as I met him, I knew he was a survivor.”
Percival now faced a daunting challenge, with the odds stacked against him. A Preterm Birth Outlook chart on the National Institutes of Health web site estimates that a male baby born at 22 weeks at Percival’s weight who received active treatment after birth has a 17 percent chance of survival. (The information on the NIH site describes outcomes based on standardized assessments for infants born at Neonatal Research Hospitals between 2006 and 2012.)
But while the survival rate for babies born at 22 and 23 weeks is generally fairly dismal, research shows that it’s getting better with each passing year. Two multicenter studies published in 2014 and 2018 in the New England Journal of Medicine and the JAMA showed that 23 and 38 percent of babies born at 22 weeks (who were given intensive care) survived to discharge. The University of Iowa, which actively treats 22-week infants, claims a 70 percent success rate, the highest reported in the U.S., according to a February 2020 article in the New York Times.
Approximately 0.5 percent of all births occur before the third trimester of pregnancy (prior to 28 weeks) and result in more than 40 percent of infant deaths, according to the American College of Obstetrics and Gynecology.
Hospital policy usually dictates whether a baby born at 22 weeks receives aggressive treatment, said Jonathan Davis, MD, Vice Chair of Pediatrics and Chief of Newborn Medicine at Floating Hospital for Children at Tufts Medical Center in Boston, who is also the sole neonatologist on staff at Cape Cod Hospital.
Deciding whether to treat an infant born at 22 weeks is “operator dependent,” he said. One of the complicating factors is that gestational age is an approximation, depending on the mother’s date of her last period and other calculations.
“It’s very difficult to date those pregnancies accurately,” he said. “Even the ultrasound and dating criteria are plus or minus a week or two.”
Women on Cape Cod with anticipated preterm births less than 35 weeks gestation are usually sent to Tufts Medical Center, due to the availability of a NICU unit, according to Richard Angelo, MD, Chief of Obstetrics at Cape Cod Hospital. Tufts has a partnership with Cape Cod Hospital (CCH) through its Pediatric Hospitalist Program.
On average, Cape Cod Hospital sees patients deliver at less than 35 weeks about two to three times a month because the patient is unstable for transferring to Boston (they are in active labor, for instance), he said.
“If necessary after delivery, these babies are transported to Tufts who sends a team with a mobile NICU,” Dr. Angelo said. “Our pediatricians do an excellent job of stabilizing these babies prior to transfer.”
When faced with a baby born prematurely in an emergency birth on Cape Cod, the doctors try to determine the gestational age of the infant and “err on the side of caution,’ said Dr. Davis.
“We prefer to bring the mothers to Tufts and prolong the pregnancy as long as possible,” he said. “If it is not possible to transfer them, then we deliver on the Cape and bring them to Boston.”
For infants born at 22 weeks, “we would not be overly aggressive (with treatment), recognizing that if you do deliver then, the long-term complications involving the lungs, heart, and brain” are generally quite serious, Dr. Davis said.
“Everybody is so excited about getting these babies to survive, but it’s important to think long term,” he said. “There are significant concerns about their brains being under-developed.”
Fifty to 80 percent of babies born at 22 weeks have “moderate to severe impairments,” said Dr. Davis. “Up to a quarter have severe CP (cerebral palsy).”
Courtney said it was daunting for her and Colin to hear that 80 percent of babies born at 22 weeks will have ‘high needs,’ but when they later learned that needing oxygen for so long after birth was considered a high need, she was able to put it into perspective. Percival has thrived, despite his need for oxygen, she said.
“No one really knows, even mothers whose babies are born at 40 weeks, whether their child will have some sort of health issue going forward,” she said.
About one in four U.S. hospitals offers treatment to infants born at 22 weeks, according to the University of Iowa. The decision whether to offer potentially life-saving treatment takes into account the mother’s age and health, whether she has received prenatal care, and the infant’s birth weight.
As a former visiting professor at the University of Iowa, Dr. Davis said the hospital there has very specialized approaches to the care of premature infants, with a brand new NICU and the latest technology. They are also located in a relatively stable economic area and residents generally have good access to prenatal care, which typically translates to better health in newborns, he said.
For Percival, there was never a question of whether he would be offered care because Providence Children’s Hospital is one of the hospitals in the U.S. that actively treats “22-weekers.” It has a near 50 percent success rate with such infants, according to Courtney.
After his birth, Percival spent the next six months in the NICU in Anchorage on oxygen in a high-humidity, temperature-controlled environment. He had a specialized ventilator that pumped air into his lungs, if he stopped breathing at any given time.
His parents went back to Fisher House and took turns spending every other night with him at the hospital. They held him as much as they could and whispered words of encouragement and love, said Courtney.
A New Life on Cape Cod
During that summer, Colin learned he would be transferred to Cape Cod, which thrilled the couple because they both have family on the East Coast and they would be close to Boston Children’s Hospital for Percival. On July 1, 2019, he was released from the hospital and the family could leave for Boston.
Courtney’s mother and aunt came to Anchorage, so they could fly with her and Percival and all the gear they would need for the flight. The airline required them to bring 150 percent of what they would need in batteries for the baby’s oxygen unit. Each battery is about the size of a paperback book, and they needed 35, which they put in three carry-on suitcases. (At home, the family used a concentrator machine, which takes room air and turns it into pure oxygen, Courtney said.)
Colin drove to Cape Cod with the couple’s two dogs and other luggage, and the family at last eased in to their life here – new surroundings and life with a fragile newborn.
“The hardest thing was once we got here and everything settled down,” said Courtney. “In the NICU, we had lots of support around. There was medical response right there. It’s a little more isolating here.”
Percival is the earliest-born baby Dr. Norenberg has ever cared for, he said. His immune system is still under-developed, and he is still on oxygen, which makes going out in public nearly impossible in normal times, let alone a pandemic.
The Spencers are grateful for Dr. Norenberg, who Courtney found when she went on Facebook and asked for the name of a Cape pediatrician who dealt with complicated cases. The couple felt a connection with him immediately, when they heard he had worked in Alaska one summer before medical school, and that he is also an adjunct physician at Boston Children’s Hospital.
“Those little highlights do matter, especially when you don’t get to meet someone beforehand,” said Courtney.
She scheduled a phone interview with him prior to leaving Alaska and said the office was a little confused when she explained Percival’s birth history.
“I told them his birthday was supposed to be May 17, but he was born in January and you could tell it was not adding up (for the staff). They thought I was confused because that gap isn’t usually that big with a premie,” she said.
She hit it off right away with Dr. Norenberg but said even he was surprised to hear how healthy Percival was and how well he had come through the birth.
“He doesn’t have heart issues, no feeding tube (he is fed partially through a tube in his esophagus), but to suck, swallow and breathe takes a lot of effort,” she said.
When they arrived on the Cape, Percival was seen every week by Dr. Norenberg, and now, unless there is a medical issue, he is seen every six months. Percival also has a pulmonary specialist in Boston due to his official diagnosis of bronchopulmonary dysplasia (lungs scarred by being on a ventilator and on oxygen for so long).
If she has an issue with Percival, she first calls Dr. Norenberg.
“He sees him; he knows him better than anyone else. I feel like some of the doctors in Boston see him based on a 22-weeker and frame everything that way. Whereas Dr. Norenberg and the team here kind of look at him as: this is Percival,” said Courtney.
When Dr. Norenberg was doing his pediatric training, doctors were not encouraged to do much for babies born at such a premature age, he said. But after getting to know Percival, he now thinks the issue may not be so cut and dry.
“There are some ethical concerns, but you have to look at that one child and how he does. Each child is on their own and some thrive, and some don’t,” he said. “With these babies, there’s a lot of medical expertise here, but a lot of luck as well.”
He said he’s glad he no longer has to make the decision whether to try to resuscitate a 22-week infant after birth, and now sees his role as one of support for the child and their parents.
“When these children are born, it’s my job to give parents hope and give kids the ability to optimize and maximize their potential,” he said.
Percival, despite having chronic lung disease, exceeded Dr. Norenberg’s expectations right away and has become popular with the doctors and staff at Briarpatch.
“Look at the joy he’s brought into the world; look how well he’s doing,” he said.
Courtney is active on a Facebook page for parents of 22-weekers, where parents share advice and insights into caring for their babies, as well as advocate for a better understanding of the issues around birth at such a young gestational age. She believes that more hospitals would treat 22-weekers if there was better data to show how well they can do if they receive aggressive post-natal care. She feels so strongly about it that she is planning to study for a PhD after she earns her RN degree, so she can devote herself to research on extremely premature infants.
“I think about what that would mean to another family or to another infant” to have more concrete data on the age of viability, she said. “It’s really hard because there’s no guarantee even offering care. But when I look at Percival and look at his smile, and you see how charismatic he is, I can’t imagine life without him.”