Naperville Sun
Baby with rare condition finally comes home
Jan. 18, 2011
By Susan Frick Carlman
It's safe to say Manuel Daniel Hernandez Pena was an underdog.
His parents, Angie Hernandez and Wilbert Pena, weren't expecting him to come into the world until sometime around Halloween. They were stunned when, during a routine visit to the obstetrician in mid-July, an ultrasound turned up a rare condition.
The image showed the 25-week-old fetus with gastroschisis: split abdomen, a condition seen in only one out of 5,000 newborns. Hernandez was sent straight to Edward Hospital in Naperville.
The little guy's liver, stomach and intestines were protruding through a fissure in his lower-right torso. His arrival during the second trimester of pregnancy added to his woes; when he was born July 19, Manuel weighed 1¼ pounds and was just 13 inches long. Before he was 24 hours old, he already had undergone the first of his seven neonatal surgeries.
It's been a roller-coaster few months, but on Tuesday, Manuel - now a strapping 12 pounds, 2 ounces - will go home at last. He'll take with him a collection of nicknames, including an apparent nursery favorite: "Manny the Manster."
The baby's mom was devastated by the news at first. It took a while to sink in.
"I was like, 'Is he going to be normal?'" said Hernandez, 22.
A lot has happened since that frightening moment. Today, Hernandez is excited to move her little boy into the room set up for him in the East Dundee home where she lives with her parents. Her mom, Patty Hernandez, is a niece of A. George Pradel, Naperville's mayor.
"It's a miracle," Pradel said. "Tears welled up in my eyes when I thought this child came in at a pound and a half, and now he's going out in a Chicago Bears T-shirt."
Manny's dad, whose middle name was chosen for the baby, is also amazed at the baby's progress.
"He's a miracle baby," said Elgin resident Pena, 19, shaking his head and smiling big. "Wow."
The massive collection of Edward staff members who have formed Manny's front line - about 10 physicians, a fleet of nurses, a case manager and more than a half-dozen hospital departments - wouldn't dispute that. There were moments when hope felt dim.
"It was initially a sad visit, when (Angie) came in," said Dr. Deanna Duray, a staff neonatologist who has worked closely with the baby since birth.
It's very rare for an infant born after just 25 weeks in the uterus to survive, Duray said. When there is also gastroschisis, the challenges are enormously compounded.
Reflux is quite common in babies with either condition, so Manny will continue to receive his nutrition from fluids delivered through tubes, at least for a while. At first the liquid diet came through a port inserted near his right collarbone. Now there's a feeding tube that attaches to his abdomen.
Gravity initially was allowed to ease the errant organs back toward their natural nesting place, but a second surgery had to be done when Manny was just a week old. The site of the fissure is now a curved red scar near the base of his nicely rounded belly.
There were other complications. Manny's prolonged use of intravenous fluids created the specter of liver damage that required a special drug made in Germany. The necessary licensing by the Food and Drug Administration took seven weeks, but the medication took Manny's liver out of danger.
The mayor marveled at his great-great-nephew's remarkable odyssey. He said he talked to a woman not long ago who told him about giving birth prematurely in 1962 to a 4-pound baby girl who couldn't be saved.
"I just couldn't get it out of my mind that the neonatal unit at Edward Hospital has been doing this for so long," Pradel said. "They do wonders out there, because they know what it's about."
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