The Story of a Holy Cross Family's Journey in the World of High-Risk Neonatal Medicine
By Richard Herrick, Professor of Chemistry and Edward A. O'Rorke Professor in the Liberal Arts
My grandchildren's birth was a new parent's worst nightmare: babies in severe medical crisis, one that could end their lives before they could leave the hospital or even be held by their mother. This is the story of how my family faced this nightmare, how Holy Cross played a role in saving two tiny lives and how the experience changed us forever.
My wife, Jamie Herrick, and I came to Holy Cross in the 1980s. Jamie was the organic chemistry laboratory supervisor from 1989 to 2006 and is currently the College's director of laboratory and studio safety. I've taught chemistry here since 1984 and serve as a member of the Health Professions Advisory Committee.
Jamie's daughter, Stephanie (Rapa) Rodriguez, is a 2005 graduate of Holy Cross. Stephanie majored in political science, and professors Edward O'Donnell and Vickie Langohr were among her favorites. After an academic internship with Worcester Juvenile Court First Justice Carol Erskine, she was inspired her to pursue a career in juvenile law. Stephanie was accepted to Western New England Law School with an academic scholarship for fall 2006. While working at the Worcester Boys & Girls Club to raise money for law school, she met and fell in love with Edwin Rodriguez, a national Golden Gloves and national U.S. Boxing champion. They became pregnant with twins. Their plan was for Edwin to make the 2008 U.S. Olympic Boxing Team while Stephanie took care of their new family. After that, Stephanie would begin law school.
The plans you make don't always work out.
This is the story of how Stephanie, Edwin and their twins faced the fight of their lives-and how three members of the Holy Cross family stood on the front lines with them.
Edwin Kelly Rodriguez Jr. almost died when he was 13 days old.
He weighed 1 pound 4 ounces, the equivalent of a pint of beer. He was 12 inches long, roughly the size of a loaf of bread. He'd never seen his mother, and he'd never been held by her. His eyelids were still fused shut, and he was too fragile to be picked up. From the time he was born, he'd been connected to an oscillator, a machine that breathed for him, pushing pure oxygen through the tube in his throat into his lungs. The settings were at the maximum levels, but even this hadn't been enough. As the alarms on his monitors rang, first in a quick succession of beeps, and then in a constant urgent squeal, it looked as if he would never have the chance to see his mother or be cradled in her arms. His vital signs had collapsed. He was dying.
Stephanie was pumping breast milk at 2 a.m. when the hospital personnel swarmed in to work on him. Nurses and doctors hovered over the tiny baby, desperately working to resuscitate him. Edwin Sr. hurried in and anxiously watched his son. He had been asleep in the small room set aside next door for parents when the alarms went off.
He and Stephanie cried and prayed at their son's bedside as the staff worked on baby Edwin. A nurse led them from the room as the doctor began to intubate the fragile little boy so he could be placed back on the oscillator. She told them that he had been without oxygen for a few minutes, and he might not pull through. She said they should prepare for the time when they might have to make a decision about continuing his care. Through tears, they talked and agreed that they wanted everything done to save their son.
That was just the first dramatic moment in the twins' 122-day stay in the UMass Memorial Medical Center neonatal intensive care unit (NICU) in Worcester. For our family, it was 122 days of a life and death struggle during which doctors, nurses and parents fought to save the babies' lives.
Our emotional journey started on Sept. 26, 2006. During a routine checkup in a previously uneventful pregnancy, Stephanie's doctor found that she was partly dilated and in danger of early delivery. She was hospitalized and prescribed medication to delay labor. This strategy only worked briefly. Three days later Stephanie went into labor, and a delivery team quickly scrambled. The babies-Edwin Jr. and Serena-were delivered by emergency caesarian section and immediately taken to the NICU. They were nearly four months early. At 23 weeks five days gestation, they were mere days past the cutoff for viability. (A normal gestation period is 40 weeks.) At just over a pound, each baby was far too small and far too undeveloped for life outside the womb. "Micropreemies" are babies born before 26 weeks gestation or weighing less than 1 pound 12 ounces; they face enormous medical problems that just a decade or so ago made survival highly unlikely. And Edwin Jr. and Serena were early and small, even for micropreemies, and their prognosis was not good.
Each baby weighed 1 pound 3 ounces at birth and lost weight the first few days-Serena dropped below a pound for several days. Their first diapers comfortably fit a golf ball yet loosely covered their hips. Their translucent, fire-engine-red skin was sticky, gelatinous and incompletely formed. Though they were given pain medication before they were handled, and the nurses were gentle, they writhed in silent agony at the slightest touch. Their eyelids were fused shut, though they raised their eyebrows as if trying to see. They couldn't cry or whimper, and the incomplete formation of their neurological system made them extremely sensitive to light and sound. They were heartbreakingly tiny and frail.
"I couldn't talk or sing to the twins for most of the NICU stay," Stephanie explains. "Noises would cause desaturations in their oxygen levels. Babies that premature aren't meant to hear noises. Overstimulation was not good for development."
Stephanie did what she could to comfort her children. "I sat with the twins and thought encouraging thoughts to them. Later, I assisted with holding tubes for feeds." She also began holding the twins to her body for skin to skin contact, called "kangaroo care." The technique is shown to help pre-term infants survive and develop.
While the twins were in the NICU, Stephanie wrote a blog, and shared these thoughts on being able to hold Serena: "The feeling of my daughter on my chest, the heat from her body against mine, and feeling (and hearing ... she has an air leak in her tube and she makes a whistling/snorting noise with every breath) her chest move as she was assisted in taking breaths, was so magical. I love my babies more than anything in this world and being able to finally be so close to at least one of them brought me so much joy. I long to have them home where I can hold them and kiss them all day."
The twins were in critical condition-especially Edwin Jr. His lungs were so poorly developed that doctors didn't expect him to survive. Each baby was in a separate incubator lying inert on his or her stomach. An intubation tube down the throat delivered oxygen from a mechanical pump. A cuff attached to a foot measured blood oxygen saturation. An IV in the umbilical cord stump delivered fluids, and banks of monitors provided constant readings.
Stephanie and Edwin Sr. lived at the hospital for two weeks, watching over their babies. Doctors let them attend morning rounds when they discussed their children. Jamie went to the NICU every day to see her grandchildren and to help her daughter. She also kept family, friends and Holy Cross co-workers informed, sending a daily email with photos that updated the twins' status.
"I started sending out emails with updates to a few friends days after the twins were born. By the end of the first month, I had 50 people from across campus who asked to be part of the daily emails," Jamie says. Friends from academic departments, public safety, IT, human resources, physical plant, development and the Jesuit community all wanted to know how the babies were doing. "They served as my consolers and confidants," Jamie recalls, "and they gave me support that was so essential to getting through each day."
Despite the support of family and medical personnel, the twins struggled. Serena needed heart surgery at 21 days to close the hole in her heart. The surgeon, in a procedure called PDA ligation, cut a small hole in her back, near the left armpit, and attached a titanium clip to her heart. The clip forced the two sides of the opening together, allowing it to close over time.
It was minimally invasive surgery, but it required general anesthesia for a tiny baby, weighing barely 1 pound, clinging to life. She made it through the surgery. Then, perhaps in an attempt to steal the limelight from her sicker brother, her lungs collapsed. Medical workers poured in as klaxons alarmed. For long minutes she lay limp, not breathing, on the knife's edge separating life and death. They managed to save her, but she had given everyone a scare.
Serena's time in the NICU continued to be troubling: She remained intubated, with a machine breathing for her, until Day 51 of her life. Her vital signs crashed in two more episodes, but she progressed well compared to her brother. Over the course of three months, she graduated to breathing on her own with a nasal cannula providing oxygen.
Edwin Jr.'s first month in the NICU was spent clinging to life. Even with the highest forms of breathing assistance, he struggled. And his dependence on the oscillator would soon prove to be a problem. Days after Serena's heart surgery, the doctor in charge asked to meet with Stephanie and Edwin Sr. They thought the meeting was to discuss giving little Edwin steroids for his lungs. Doctors had previously said they needed to wait one month from birth to administer them. But he dropped a bombshell, saying, "I have to be perfectly honest with you. Edwin Jr. has a nearly zero percent chance of survival." The doctor went on to say that over the last 20 years, no baby at the UMass Memorial Medical Center, the region's only Level III NICU for high-risk obstetrical and neonatal care, had ever survived on such high settings for such an extended time. Edwin was relying too much on the oscillator, and he was showing no signs that he could be weaned from the machine and the drugs he was taking. The doctor said that using steroids would not help, and that they would "just prolong the inevitable." He also had an infection, and they couldn't give him steroids until it cleared.
The one hopeful comment he made was that he hadn't given up on Edwin and that he had no doubt Edwin wanted to live. The doctor said, "He has the will of a Cadillac and the body of a Chevy."
There were tears as the parents discussed their son's situation. Edwin Sr. remained adamant. He believed that his son would survive; he didn't want to give up. Stephanie agreed. They would support their son in any way they could.
Next: Edwin Jr. goes into "death spells," and the family hangs onto hope.
The next day, almost as if he'd been at the meeting, Edwin Jr. crashed. He wasn't breathing and had no discernible heartbeat. Six doctors, nurses and respiratory therapists huddled over him. Stephanie, afraid that they were losing their little boy, called Edwin Sr. and told him to hurry to the hospital. The medical team took Edwin Jr. off the oscillator and used a manual air bag to inflate and deflate his lungs. Miraculously his oxygenation numbers climbed back to normal levels. He had cheated death once again. In a piece of unexpected good news, his infection, which had prevented doctors from giving him steroids, had disappeared. That day, the doctor told Stephanie and Edwin Sr. that baby Edwin needed the same heart surgery that Serena had recently undergone and needed it soon-but he said that he still had serious doubts that Edwin's lungs would improve quickly enough for him to survive the surgery.
Baby Edwin showed marginal improvement over the next three days; the doctors OK'd his surgery. On Day 33 he went by ambulance-a little boy in his incubator, connected to a ventilator-to Children's Hospital in Boston, an hour away. He had the surgery and spent the night in the Critical Care Unit. On the return trip to Worcester the next day, the ambulance had a sudden loss of power, forcing the ventilator onto battery backup. It made an emergency stop in Framingham, and the team moved their tiny patient to another ambulance. He made it back to Worcester safely. The miracle baby had beaten the odds yet again.
Edwin had one more series of miracles in store. When he reached the 60-day mark, he suffered a series of periods that the doctors called "death spells." They were triggered by bronchial spasms where the muscles around the airway clamped down, and no air entered his lungs. His heart rate would slow or even stop, and he would turn blue, then white and lie limp. Doctors, nurses and respiratory therapists worked hard each time to bring him back.
One of those doctors was Alan Picarillo '93, whom Jamie describes as "our rock."
"Alan was one of my first Holy Cross students," Jamie says. "His smiling face and optimistic attitude guided us through Edwin Jr.'s death spells. At a time when we thought the twins had been through the worst of it, the fears resurfaced, and we had to wonder, 'Would Edwin Jr. make it home after all?' "
Baby Edwin had five death spell episodes in 10 days, and each time it seemed he wouldn't make it. Then things unexpectedly turned around. Neither Stephanie nor anyone else could know it, but the worst was over.
Each twin would still have to endure one more surgery-a vision-saving eye procedure on Dec. 31, 2006. But the babies gained weight and were cleared for discharge.
After 122 days in the NICU, on Jan. 29, 2007, they left their first home and traveled a short distance to their new home. They weighed just 5 pounds, were fed oxygen through a nose cannula 24 hours a day and had several hours of nursing care each week.
But there were still crises: Each was hospitalized more than once. At age 20 months, Serena endured a four-hour operation on a vocal cord accidentally paralyzed during her heart surgery.
Day-to-day life was anything but normal, even when the babies came home. "The only time we ever left the apartment was for doctors' appointments, and there were at least one or two a week with pulmonologists, audiologists, neurologists and routine doctor visits," Stephanie explains. "Carrying two car seats with children attached to portable oxygen tanks and tubes was overwhelming. The fear of a tank emptying prematurely or the cannula coming out of the nose of either one on the drive was terrifying."
Sometimes the monitors would alarm from the twins' movements alone, sending their parents' hearts racing. They always drove them together, so one could drive while the other watched over the babies in transit.
For two years the twins were monitored, and Stephanie recalls there was a beep every night that would send her and Edwin Sr. flying in to check on the babies.
Slowly their medical troubles eased. By age 2 and a half, neither twin needed oxygen unless sick-and when they reached age 5, Stephanie returned the last oxygen tanks and put away the monitoring equipment.
"It was an incredible relief when the oxygen tanks were taken away. We were very thankful to have made it through the most challenging times. We began to experience a sense of normalcy and realization that we now had children who aren't critically or chronically ill," Stephanie says.
Now nearly 6 years old, the twins have improved dramatically and have just finished a year of kindergarten. They will never be completely free of the effects of that early trauma: Edwin Jr. has a moderate case of cerebral palsy and autism. But he continues to surprise doctors and family members. At first they said he would never walk or talk. Yet he walks everywhere and can put together simple sentences. He loves to play in his bounce house. Serena has mild cerebral palsy that affects her fine motor skills. She is small and her paralyzed vocal cord keeps her voice quiet, but she is a happy, impish girl. She loves her princess dolls and her dog, Mellow. Recently Serena and Edwin began playing T-ball in Worcester's Challenger League on a team called The Crusaders, coached by Kathleen Moylan '87. (Moylan and her husband, Kevin, organized a league for children with special needs.)
Lately, when Edwin Jr. visits Jamie and me, he uses his new favorite sentence: "Watch golf now, Gaga." Gaga is his word for grandpa. He stands transfixed, two feet from the TV, watching the golf balls in flight, pointing at the flags marking the holes and providing his own commentary.
Serena is not interested in watching golf, but loves playing "baby tag," a game she invented that has the person who is "it," carry a baby doll and tag people with the doll.
"My greatest joy is watching Serena and Edwin (aka Buddy) grow and develop their own special personalities," Jamie says, adding that Serena acts much like Stephanie did as a child- talkative, strong-willed and yet playful. She also notes a special bond between the siblings who have gone through so much. "Serena will say, 'Grammy could I have an apple and would you cut it so Buddy can share with me?' She has a special sense of patience and understanding with him.
"And Buddy is the most innocent, sweet child I have ever known. His smile melts my heart. He is just learning to talk, and I marvel at every word, just as I marveled at his first steps."
Our family is moving forward with the speed of those who never had to endure the medical nightmares of the twins' earliest days. Stephanie completed her master's degree in guidance counseling in May from Fitchburg (Mass.) State University. She has been an assistant guidance counselor for the past two years and recently accepted a guidance counselor position at a Worcester school. With the birth of the twins and with their medical problems, Edwin Sr., whose nickname in the ring is "La Bomba," wasn't able to train properly and failed to make the 2008 Olympic team. He turned professional in January 2008 and is now 21-0 after his recent HBO-televised victory at Madison Square Garden. (HBO will also carry his next fight on Sept. 29.) He hopes to have a shot at the super middleweight world championship in the next year.
"A lot of my strength comes from knowing that my kids have been fighting for their lives since they were born," Edwin Sr. says. "They didn't ask to be brought into what they were brought into, just playing the cards they were dealt. We're just trying to make the best out of it that we can. But there is a lot of motivation for me, knowing that I have to provide for them.
"They are the champions in my life, and the only thing I can do is be the world champion and give them the life they deserve."
When Stephanie thinks back to the night she was admitted to the hospital, she remembers a NICU doctor telling her that "23-weekers don't always make it, especially twins, because twins tend not to develop as quickly as single babies." He also said that preemies this early are rarely 100 percent normal. He told her and Edwin Sr. that they could choose not to provide care for their babies and hold them in their arms for their last moments, or they could have the doctors try to save them.
"To me the choice was so easy," says Stephanie. "I knew that life might be hard and that Serena and Edwin might be severely disabled. But we loved them, and we were determined to accept them whatever their condition. Giving up on them would have been a cost way too precious to pay."
Next: Meet the Holy Cross graduates who were part of the twins' neonatal care team.
Three Holy Cross graduates-all doctors, and all former students of Rick and Jamie Herrick-were among the first to care for twins Edwin Jr. and Serena.
As young premed students, Erin Barlow, M.D., '00 (left), Alan Picarillo, M.D., '93 (right) and Stacey Valentine, M.D., '97 (not shown) often visited Holy Cross chemistry Professor Rick Herrick and organic chemistry lab supervisor Jamie Herrick to get academic advice, direction and, sometimes, a needed dose of reassurance.
In 2006, those roles were dramatically reversed. As their newly born grandchildren, Edwin Jr. and Serena, struggled to survive, the Herricks leaned on their former students for medical advice, direction and, sometimes, a reassuring embrace.
Picarillo, a neonatalogist at UMass Memorial Medical Center in Worcester, directed the twins' care in the NICU. "Alan's medical expertise saved Edwin Jr., but he also saved us along the way," says Jamie. "He kept us calm and cautiously optimistic." Barlow, a UMass Memorial obstetrics and gynecology physician, was a second-year resident at the time; she cared for the twins' mother before and after delivery. "The morning the twins were born ... Erin Barlow found me and hugged me," Jamie remembers. Valentine, now a pediatric ICU pediatric physician at Boston Children's Hospital, cared for Edwin when he was transferred to Children's for heart surgery. Jamie was able to speak with her on the day of the surgery. "It was another comforting moment," she says.
While every patient is important, these doctors hold a special place in their hearts for the twins. "Jamie was my teacher, and I knew Rick," says Picarillo. "Because of that Holy Cross connection, they were family, and so Edwin and Serena were family too."
Each of these Holy Cross graduates knew from a young age that they wanted to be a doctor, but each followed a unique path to medical school. Valentine, who was the first in her family to attend college, announced to her mother that she wanted to be a pediatrician soon after being hospitalized as a child. As the medical experts struggled to figure out what was wrong with her-the eventual diagnosis was a kidney infection-most of the doctors spoke only to her parents, never to Valentine. That changed with one pediatrician. "She sat down with me and said, 'This is what's going to happen,' and she drew a kidney for me," says Valentine, who attended the University of Vermont College of Medicine, followed by an internship, residency and fellowships at Boston Children's Hospital and Harvard University. "She explained to me everything that was going on. I was 10 years old, but I understood. I felt so much better that someone was talking to me. I wanted to bring that good experience to other children."
While her profession provides exciting highs, there are also difficult lows, as when dealing with grave cases, such as Serena and Edwin's. "The advances that we've had are just phenomenal in terms of being able to support those babies," Valentine says. "As a micropreemie, it's very intense. It's a long road, and I tell parents, 'Your life is no longer concerned with month to month or even day to day. It's minute to minute.' "
Picarillo fulfilled a pledge made in his high school yearbook to become a pediatrician, graduating from UMass Medical School, where he also did a pediatric residency and neonatology fellowship.
Picarillo's path, however, included a yearlong detour from school. As he was getting ready to (continued on Page 50)
(continued from Page 49) graduate from the premed program at Holy Cross, he was struggling to decide if medical school was the right option. "I had a lot of serious talks with [former chemistry professor] Mike McGrath, who was a great mentor," says Picarillo. McGrath encouraged him to take time off and helped him get job teaching at a Worcester high school. "It was a fantastic experience," says Picarillo, who knew as soon as the acceptance letter from UMass Medical School arrived months later that he was still committed to being a doctor. "I had an incredible experience at Holy Cross," says Picarillo, who hopes that one of his two sons, currently ages 6 and 8, will be the fifth generation of Crusaders in his family.
Barlow entered Holy Cross confident that she would be a pediatrician. But an internship during her third year with a pediatric surgeon at UMass Medical School changed her focus. "I was exposed to surgery at that time," says Barlow, "and I was hooked." After graduating from and completing her residency at UMass Medical School, she had a fellowship at The Hospital for Sick Children in Toronto. Today, this surgeon has a specialty in pediatric and adolescent gynecology.
Barlow, like Picarillo, took a detour from academics after Holy Cross to teach high school biology for a year. "It was a great learning environment, and a lot of work," she says. "Working as a teacher helped reinforce that I wanted to make teaching part of my medical career, mentoring residents and students, for example." For all its challenges, Barlow's career provides benefits that are evident on the bulletin board in her office, which is covered with pictures of babies and toddlers she's helped deliver. "That's one of the great things about obstetrics-I get pictures on first birthdays and Christmas cards," she says.
All three of these doctors applied to Holy Cross specifically because of the excellent reputation of its premed program, the opportunities to work on research directly with professors and the intimate class sizes. "You hear all these horror stories about medical school, but I loved it," Picarillo says. "I'm being 100 percent honest-I still think medical school was easier than Holy Cross. It speaks to how well prepared I was coming out of Holy Cross." —Christine Hofmann-Bourque
Next: Patricia (Finnegan) Gates '78 knows all too well what the Rodriguez and Herrick families went through. Her daughter, Mary, was in the same NICU 20 years ago. And now, that fragile infant is a strong Holy Cross student! Read more of their story, PLUS Rick Herrick describes the "Four Horsemen of the NICU."
Survive and Thrive
By Rick Herrick
When Patty (Finnegan) Gates '78 of Princeton, Mass., gave birth to Baby Mary in 1992, she wasn't worrying about educational opportunities for her daughter, she was worried about her survival. Mary weighed just 1 pound ½ ounce at birth and had only reached 26 weeks gestation. Patty had given birth early as a result of severe early preeclampsia, a disease of pregnancy. Mary spent 157 days in the same NICU that would later be home to Serena and Edwin Rodriguez.
It is still difficult for Patty to think back on those days, and she "can remember with absolute clarity our terrifying days in the NICU." Mary had numerous medical crises, including a horrifying moment when her little heart stopped while her parents stood by. After coming home from the hospital, Mary was on oxygen for two years. (See photo, right.)
But like the Rodriguez twins, Mary survived and thrived. Now a rising senior at Holy Cross, she has just completed a year studying abroad in Galway, Ireland.
Unfortunately, the early life experiences of Edwin Jr., Serena and Mary '13 are not unique. It is estimated that there are 50,000 micropreemies born each year in the United States, about 1 percent of all births. Their survival rate ranges from 10 to 80 percent. One-third of survivors have few noticeable problems from their ordeal. The other two-thirds have a range of serious problems covering their lungs, neurological development intellectual deficits, intestinal/eating problems, eye concerns and more.
"I've always been especially, if not excessively, uncoordinated," Mary shares, "and that is in part due to being a preemie. That is hardly something to complain about compared to the list of afflictions I could very well have had, so I consider myself extraordinarily lucky."
Mary doesn't recall "clambering around" with her oxygen tank as a baby and toddler, but according to her family, she did just that. "I would say that goes to show I've never been one to shy away from a challenging task, and that is something I pride myself on in every facet of my life," she says.
The probability of extreme premature birth hasn't changed much over the years, but the chance of surviving has increased greatly in recent years as understanding of the medical problems of micropreemies has improved and better technology and medical treatments have been created.
"I cannot remember a time when I was unaware of how lucky I am to have gone through such a traumatic and risky entrance into the world without major side effects," Mary says.
Mother Patty sums up the feelings many families of preemies feel after their ordeal: "She is a miracle. We are truly blessed."
Mary Gates '13 studied abroad in Ireland her junior year. "My year abroad went above and beyond my expectations," she says. "It was a remarkable year ... I loved being immersed in an international environment with Irish and Spanish roommates. It gave me a level of independence I have never had before," shares the young woman who was once connected to oxygen machines to survive. "I truly relished it as a maturing experience. It was the part of my Holy Cross education I value most thus far."
"This photo was taken in front of O'Kane on Mary's 7th birthday," explains mom Patty Gates '78. "I took her to Mass every year on her birthday and this particular year I decided to take her up to Holy Cross. Little did I realize she would be back as a student."
The Four Horsemen of Neonatology
Through the ordeal of watching his grandkids fight for life as micropreemies, Chemistry Professor Rick Herrick got an intense lesson in modern neonatology, including the four conditions that threaten premature infants most seriously. Here, he shares some of what he learned.
The NICU (neonatal intensive care unit) is a hospital unit devoted to the care and treatment of ill or premature infants. Because of the high-cost and technology-intensive nature of NICUs, there are relatively few and each must serve a large geographic region. The UMass Memorial Medical Center NICU was founded in 1974 and serves the central Massachusetts area.
The NICU at UMMMC is typical. The main room is spacious, divided into individual stations surrounded by equipment and instruments for each miniature patient. The most commonly used piece of equipment is the incubator. Basically a small box that encloses the baby, it controls the temperature and humidity for fragile newborns and serves as a barrier to germs and infection.
Micropreemies are susceptible to a wide range of often fatal diseases and health issues as a result of their extreme prematurity. Bacterial infections are a constant worry. (Edwin Jr. and Serena each had a spinal tap at two weeks old to check for meningitis.) Diseases of most major organs are a problem and blindness is a concern.
But with all of the different maladies that micropreemies are susceptible to, there are four conditions that parents and caregivers of these infants fear most of all: chronic lung disease (CLD), intraventricular hemorrhages (IVH), necrotizing enterocolitis (NEC) and patent ductus arteriosus (PDA). Like the original Four Horsemen of the Apocalypse¾war, famine, conquest and death¾the biblical scourges of civilization, one or more of these conditions can readily lay waste to a micropreemie.
CLD. Nearly all micropreemies will have CLD. Healthy lungs use alveoli, small spherical sacs that coat the interior of the lungs, wetted by a special natural surfactant, to absorb oxygen into the bloodstream. The lungs are not used in the womb and are not fully developed until the end of normal gestation. The more premature the infant, the more undeveloped are the alveoli and the surfactant. There are several levels of breathing assistance available. Most extreme is the oscillator, a machine that vibrates the lungs at high frequency and pumps in oxygen. Next is the ventilator, a machine that inflates the lungs with oxygen then allows the lungs to deflate in regular cycles. For patients with less severe oxygen needs, an oxygen mask, called CPAP (continuous positive airway pressure), or a tube into the nose, called a nasal cannula, are used.
IVH or Brain Bleed. The cerebral blood vessels in premature baby's brains can spontaneously leak blood causing brain damage. Brain bleeds are labeled in increasing severity from grades 1 to 4. Doctors check for brain bleeds by looking at images obtained using ultrasound or X-rays. The twins each had moderate brain bleeds in the NICU.
NEC. The intestines, like most major organs, are incompletely formed in premature babies. The movement of food and air through the intestines can slow or stop, and intestinal tissue dies as it is attacked by normally helpful bacteria. This is a life-threatening disease for micropreemies. The doctors at UMMMC were cautious about beginning the twins' feeding. A few days after birth they received their first food. Edwin ate 1.5 mL of formula (by a nasal tube) every three hours. Serena could handle only 1 mL every three hours¾33 mL is approximately 1 ounce, so this amounted to mere drops of formula at each feeding. The caution paid off: Neither twin suffered intestinal problems.
PDA. The lungs in a fetus are not used to breathe oxygen. A temporary blood vessel in the heart, the ductus arteriosus, causes the circulatory system to bypass the still developing lungs. This vessel closes after birth as the lungs begin breathing air. In premature babies and in some infants, the temporary vessel doesn't close, leaving a hole in the heart called a PDA. If serious, it is closed by surgery as it was for each twin.