s

23 Weeks, 5 Days

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.