A tiny baby's struggle for life shows heart of a community
ST. JOSEPH – When St. Joseph United Methodist Church held its live Nativity procession last month, more than a few tears were shed among the congregation.
"There wasn't a dry eye in church that day," said the church's pastor, the Rev. Mark Harris.
Home after 10 weeks in the hospital – and playing the starring role in the holy family – was little Murphy Rahn, an infant who went through more medical trauma in the first months of her life than most people ever hope to know.
Born in August with two heart defects and Down syndrome, 5-month-old Murphy underwent two surgeries and a touch-and-go recovery before her parents, Dale and Jolie Rahn of St. Joseph, could bring her home.
The Rahns say they first got the news that their fourth daughter had a defective heart during an ultrasound 18 weeks into the pregnancy.
Jolie Rahn remembers asking the doctor what he was looking for in the ultrasound, and he pointed to a hole in the center of her tiny daughter's heart, a condition known as atrioventricular canal defect. At that point, she said, she was almost too numb to take in the next thing the doctor explained: that this particular defect often comes with Down syndrome.
Jolie Rahn said she was offered prenatal testing for Down syndrome but declined because knowing wasn't going to change anything for her and her husband.
"I wanted this baby," she said.
Later in the pregnancy, Murphy's second heart defect, a constriction of her pulmonary valve, was discovered.
"This baby really had a messed-up heart," Jolie Rahn said.
Murphy was born Aug. 8 at OSF-St. Francis Medical Center in Peoria, where the Rahns' Carle Clinic doctor had referred them to a pediatric cardiologist.
The plan was for the Rahns to bring Murphy home initially, then bring her back to the hospital in a few months for surgery, because most babies with this defect aren't in trauma right away, Dale Rahn said.
As it turned out, Murphy couldn't wait months. At home for a week, her skin would take on a bluish tint when she cried, and the Rahns were told not to worry about that as long as her skin returned to a pink color. But at a two-week checkup, Murphy's skin took on a bluish tint and didn't "pink up" again, and she was taken immediately to surgery.
During her many weeks in the hospital, Murphy went through both insulin shock and sepsis, a severe illness resulting from an infection. She got a skin rash, she swelled up, bruised easily and had blood clots in both legs. She was kept on a ventilator. Several times, the Rahns said, she wasn't expected to pull through.
"I just kept thinking, 'Is she ever going to come out of this?'" Jolie Rahn said.
Meanwhile, she and Dale were staying several nights a week in a hotel in Peoria to be near Murphy while Dale's mother stayed with their other three daughters, Alora, 12, Elyssa, 9, and Teagan, 4. Dale, a software engineer for Motorola, was able to continue working from the hotel while Murphy remained in the hospital.
On Oct. 17, Murphy underwent the next surgery to make the final repair to her heart. Doctors had planned to wait until she was 6 to 9 months old but eventually decided Murphy wasn't going to survive off a ventilator until this surgery was done.
Jolie Rahn said she got through the ordeal with the support of her friends and prayer.
"I kept saying, please don't take us so far, and just take her away," she said.
Still, "I was afraid, but at the same time I felt real calm. I thought she was going to overcome this."
Dale Rahn said he kept kept going by remembering he and Jolie had too many people depending on them to fall apart.
Both originally from Indiana, the Rahns moved to Illinois when Dale went to work for Motorola, and they made their home in St. Joseph in 1994. They moved back to Indiana for a time when Dale took another job, then moved back to St. Joseph when he decided to return to Motorola. Now, his wife said, the move back to St. Joseph – where she and her family have good friends and support through their church – was meant to be.
Church members have organized a fundraiser for Feb. 17 to help the Rahns pay their medical bills – which are expected to be several hundred thousand dollars for their share alone – and one of the organizers, Connie Jamison, said it's going to be the first of many events to help the family.
The Rahns mean a lot to their fellow church members, she said.
"They don't have a lot of family living, so everybody has adopted them," Jamison said.
These days, the Rahns say Murphy's heart is doing very well, though she'll need to be on medications and in touch with a cardiologist for a very long time.
She already is getting speech, occupational and physical therapy once a month but in many ways is functioning like any baby, her parents said. She is sleeping and eating well, smiling, kicking, babbling and batting at toys with her hands.
"You just have to hold baby Murphy for a few minutes, and you're in love," Jamison said.
Harris said the Rahns' faith and their unconditional love for Murphy made all the difference in what he sees as a miraculous turnaround for this baby.
"There was no question all along that she was going to be welcomed and loved in this family," he said.
The Rahns said the surgeries and hospital care might wind up totaling about a million dollars when all the charges are calculated, and the amount that their insurance won't pick up will likely run about $200,000 to $300,000.
That's so much money, "I can't wrap my mind around it," Jolie Rahn said with a laugh.
She'd rather wrap her arms around Murphy. Any worry she and Dale have about the medical bills pales in comparison with their happiness in having Murphy home.
That doesn't surprise their pastor.
"They have understood all along what the important thing here is, and the important thing here is Murphy, and that she's home, and the rest of it will work out," Harris said.