'I've gotten the greatest gift ever for Christmas'
December 25, 2008 5:00 AM
Jennifer Alley with her newborn son, Felton Steven, at UPMC Family House in Shadyside yesterday.
By Mackenzie Carpenter Pittsburgh Post-Gazette
She wasn't supposed to be here, at Pittsburgh's Family House in Shadyside, a mother cradling her newborn on Christmas Eve.
Jennifer Alley always wished, but never dared believe, that she'd be a mother someday. Born with a rare intestinal disorder -- chronic idiopathic intestinal pseudo obstruction -- her own childhood was a blur of rushed visits to the hospital, intravenous hookups full of nutritional formula to keep her nourished and drugs to dull her constant abdominal pain.
Doctors told her parents she'd probably not live to age 5.
Yet, last night Ms. Alley, age 26, was giving Felten Steven, age 1 week, his bottle and talking more like a seasoned old pro of a mom than someone who had just produced a medical miracle.
"He's doing 4 ounces of formula every four hours, and the pediatrician's very happy with his weight gain," said Ms. Alley, of Marietta, Ga., who has nonetheless come to regard Pittsburgh as her second home since undergoing small bowel transplant surgery at UPMC four years ago.
While the surgery was certainly life-changing for Ms. Alley, what happened after that is definitely a tale for the history books, for she is the first adult small bowel transplant recipient to give birth.
"The first in the world," noted her surgeon, Dr. Kareem Abu-Elmagd. "She is a remarkable person."
Like most patients suffering from pseudo-obstruction, which prevents the intestines from absorbing food, Ms. Alley had to be fed intravenously -- first, as a child, around the clock, and then, as a young adult, at night, when she slept.
"Most of these children used to die before becoming an adult. Jennifer was very lucky to survive intravenous feeding, because it eventually leads to all kinds of problems -- liver failure, blood infections, blood clots, osteoporosis." said Dr. Abu-Elmagd. "IV feeding can save your life, but not for long, which is why small bowel transplants are such an important advance."
Between 100 and 150 small-intestine transplants are performed in the United States a year, he said, with UPMC -- the first to perform the procedure successfully -- performing more than 50 small-intestine transplants annually.
Given the disease's rarity, there's not a huge demand for small bowel organs, and Ms. Alley didn't wait long for one.
"All I know is that he was a 29-year-old man named Steven," she said of her donor.
Five weeks after her surgery in 2002, Ms. Alley had an organ rejection episode. With aggressive immuno-suppressive drugs she survived -- and thrived, gradually shifting over to a low dose of a single non-steroid anti-rejection drug, which she received every other day. She was carefully monitored -- with blood tests, and biopsies -- for subtle changes in her health.
Nine months after her surgery she returned to Georgia, although she'd have to return to Pittsburgh frequently for checkups. Then, out of the blue, one year after her operation, Dr. Abu-Elmagd surprised her with a question.
"He asked, 'When are you going to have a baby? I was shocked. 'Can I have a baby?' I asked him," she recalled. "I had always dreamed of having a child, but never thought it was possible to have my own. We'd been considering adoption, but he told me I was definitely healthy enough to try."
Dr. Abu-Elmagd recalled Ms. Allen asking him, while she was being prepared for the transplant, to remove her reproductive organs, since she and her husband, Daniel Smith, were planning to adopt.
"I said, no, I'm not going to take them out, they're very healthy and I wasn't concerned at all."
Ms. Alley faced big odds, to be sure. Many transplant patients struggle with infertility due to extensive scar tissue that forms in the abdomen before and after a small bowel transplant, making conception difficult.
Moreover, patients on high doses of immuno-suppressant drugs run a high risk of miscarriage or stillborn births.
But because she was on UPMC's low-dose therapy, she was able to get pregnant, although it took nearly a year.
"We'd just about given up when one day, I noticed that the smell of cigarette smoke was making me sick," Ms. Alley said. "And then I got a headache. I told my mother, and she said, you know, when I was pregnant, I had the same experience. I bet you're pregnant.'"
Her pregnancy went smoothly, although her family fretted.
"I was scared," said her older sister, Jessica LaGrossa. "I was very worried about my sister during her pregnancy, I was worried about the baby's health, but being there in that room when he entered the room -- I'm so proud of her. I'm so happy."
Ms. Alley had her baby at Magee-Womens Hospital, which specializes in high-risk pregnancies. Initially, because the baby was breech -- legs first -- there was concern she'd have to have a Caesarean, which was not an optimal choice given her previous surgery.
"But fortunately, the baby changed his mind and turned around into the normal position and there was a spontaneous, smooth delivery," said Dr. Abu-Elmagd.
All of which amazed Ms. Alley, and her family, given what she's gone through over the years.
"People asked me, was I in pain?" she recalled, noting that she had an epidural. "The pain of childbirth was nothing like what I experienced with my disease growing up."
Not to mention the constant threat of an early death.
"I don't think we ever verbally said out loud she wouldn't make it, but it was always in our minds," said Ms. LaGrossa, who lives in Chester County. "I think everyone tried their best not to make a huge deal over her situation. It was just life. And now, to say that this is amazing is an understatement."
"The baby is so precious," she added, her voice cracking.
During the pregnancy, Ms. Allen was able to exchange letters with the father of her organ donor, writing to tell him she was expecting a child and that if it was a boy, she would name the baby Steven.
"He wrote back and said he would be honored and that he knew his son would be honored -- and that if it was a girl, he'd forgive me."
A few days ago, she wrote to tell him about Felton Steven.
"I haven't heard back yet," she said. "But I cried. One of the things you go through when you're a donor recipient is that you're waiting for someone to die, and you feel guilty about that. A lot of people have told me, this is the plan and you couldn't have changed that and at least they get to help you. And when his father heard from me, he said he was grateful that some good came from what happened."
And so is she.
"I've gotten the greatest gift ever for Christmas," she said.