Finding Strength in a Tiny Package
Rachel Staffa’s bedroom is typical of a 16-year-old girl’s.
Almost.
She has a closet full of clothes, a zebra print bedspread with oversized pillows and an enormous American flag hanging on her wall.
She also has a crib set up in the corner for her one-month-old son, Sam.
For more than a month after Sam was born, the crib was empty.
Samuel James Webb IV, named after his father, Rachel’s 19-year-old boyfriend of three years, was born with gastroschisis, a defect in which parts or all of the small intestine and other internal organs are on the outside of the body.
Gastroschisis affects approximately four out of every 10,000 babies. It can be fatal.
“He almost died the day he was born,” Rachel said in her soft and girlish voice, hugging her fragile son a bit tighter.
Rachel didn’t plan to get pregnant. But she insisted on having the baby. “I’m keeping it no matter what,” she told her mother, Maureen Barnes.
“She asked me how I was going to do it,” Rachel recalls. “I said that Sam [the father] had a job and we were going to do it on our own.”
The possibility of risks, costs, complications and a long stay in the neonatal intensive care unit (NICU) never occurred to Rachel. She found out Sam had gastroschisis after her routine 12-week ultrasound. “I had never heard of it before,” she said. “I cried for hours when I found out.”
Young mothers, 14 to 18 years old, are five times more likely than women older than 25 to have a baby with gastroschisis.
Once reality set in, Rachel began to prepare for Sam and eventually dropped out of the Pinellas Park Criminal Justice Academy, a magnet program for students interested in studying law. Rachel was a 10th-grader.
“I just started getting the house ready,” Rachel said. “I was disinfecting everything,” she laughed.
Rachel and the baby live with her parents in central St. Petersburg.
Sam was born by Caesarean section in the emergency room at Bayfront Medical Center on May 18. While babies with gastroschisis can be delivered naturally, Sam’s birthday came two weeks sooner then expected after Rachel fell on her back during a walk and went into labor.
After the delivery, it was clear Sam’s case was more severe than Rachel’s doctors and family had anticipated.
Rachel was immediately given a choice by doctors at All Children’s Hospital: Let Sam die or take a chance. She decided to take a chance. Sam went in that night for the first of several operations.
“Sam’s situation was particularly worrisome,” said Dr. Andre Hebra, a pediatric surgeon. Hebra, who performed Sam’s first surgery, has treated dozens of gastroschisis cases during the past 15 years. “We had to do an emergency bedside surgery.”
Only hours after the surgery, doctors say Sam made an unexplainable turn toward recovery.
“I don’t know why,” Rachel said. “All I know is that I’ve never prayed so hard in my life.”
Rachel says that neither family is particularly religious, but they chose to have Sam christened in the hospital the night he was born, just after his first surgery.
Over the course of the next eight days Sam had numerous surgeries that allowed doctors to slowly place the intestines inside his tiny 5-pound frame.
Using a prosthetic sac called a silo to hold the intestines, doctors incrementally pushed the organs into the abdomen, in a process called staged closure.
“It can be hard because it is such a tiny space,” said Melody Van Doren, the nurse in the NICU who cared for Sam during his month-long hospital stay. “They had to cut out some of his bowels because it was too squished in there.”
When Sam’s staged closure was complete, he moved into a new room in the NICU that allowed Rachel to spend all day with her son under the watchful eye of Van Doren, several other NICU nurses, resident doctors and surgeons.
Gastroschisis recovery time can be as long as one year. But only 34 days after Sam was born and nearly died, he was ready to go home. “He’s amazed all the doctors,” Rachel said. “He is very strong.”
Hebra agrees. “It’s not what I would have imagined one month ago,” he said. “He’s done so well.” Sam was released from the hospital June 23.
Hebra cites the preparation and efficiency of the operating room and the availability of doctors and specialists as the primary reasons Sam survived.
"Rachel has a different theory.
“He is a tough little boy,” she said. “And, he loves his mommy.”
Life is not always as simple as that.
The average cost of hospitalization, surgeries and physician fees for patients with gastroschisis is upwards of $125,000. Rachel’s parents paid the hospital fees and are currently financially supporting both Rachel and the baby.
“They have all been really supportive of me,” Rachel said of her family.
Her parents declined to comment on Rachel’s situation.
Gastroschisis remains a mysterious defect. Hebra said it was most common in Florida and California, but says there is no evidence to suggest why. Probable causes can include poor prenatal care, substance abuse and blood abnormalities in the mother. Rachel says that none of these explains what happened to Sam.
“She’s done very well with all of this,” Van Doren said, “especially for her age. She has kept up with everything. She’s a very loving mother.”
With a defiant smile, Rachel agrees. “Everyone is surprised with how well I’ve done,” she said as she gently rocked her son out of the urge to cry.
Rachel says both she and Sam are doing well.
Sam will require only routine baby care from now on. While some children have problems later in life after having gastroschisis at birth, Hebra says Sam’s prognosis is very good.
For Rachel, the biggest surprise was the long, late nights. “I didn’t know he’d like to stay up so long in the middle of the night,” she said. She keeps Sam in a bassinet on the floor next to her bed for late night feedings, but says it is hard to stay up alone with him at night.
Her boyfriend, Sam, spends the night sometimes. “He’s very good with little Sam,” Rachel said. He also declined to comment about his son or his situation. “I guess it’s just too hard for him to talk about,” Rachel said with a shrug.
Dr. Hebra says it is very common for new parents and families to be “stressed out” when dealing with the reality of a sick newborn. He remembers Rachel and her family being “anxious and emotional” during the first few days.
Now that Sam is home, Rachel is focusing on her new day-to-day routine. “Really, he just sleeps a lot,” she said gazing at her tiny son who is now quiet and still in her arms.
Rachel plans on going back to school in the fall. But not to the criminal justice program. Dropping out left her too far behind. She hopes to start a duel enrollment program at St. Petersburg College in September. Sam’s paternal grandmother runs a child-care center and will take care of Sam during the day when Rachel goes back to school. In all, Rachel seems undaunted by the task at hand. She speaks about her life and her future quietly but confidently. She also hopes to marry little Sam’s dad, “just not for a little while,” she said.
This afternoon Rachel’s boyfriend and stepfather are both home, but Rachel and Sam are in their room, alone. It is clear that they both need each other. “I became a lot stronger with him and for him,” she said, “stronger than I ever knew I could be.”
