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Five years ago, Michael and Meagan Witkowski of Cecil Township welcomed little Mikey after a fairly standard birth at UPMC Magee-Womens Hospital in Oakland. When the time came for post-partum testing, they handed him over to the nurse – and were taken aback when she abruptly left the room just a few minutes later.
That surprise was nothing compared with what happened next. “It was terrifying; it was shocking,” recalls Meagan. “The doctors came and told us there was something wrong with our son.” The nurse had not been able to take Mikey’s temperature because he was born with an imperforate anus. His anatomy lacked an opening to his rectum.
Imperforate anus affects approximately one in 5,000 children born each year in the United States. Other anorectal malformations include an anal passage that is too narrow, a blocked anal opening, or a rectum that is connected to the urinary tract by a fistula.
Hirschsprung’s disease, or congenital aganglionic megacolon, is another condition affecting approximately 25 percent of newborns with colorectal problems or one in 5,000 births overall. In Hirschsprung’s disease, parts of the large intestine (always affecting the rectum) lack the nerve cells necessary to regulate the colon’s activity. The lack of function contributes to blockage, which causes the colon to stretch. The usual treatment is surgical; the surgeon pulls an enervated part of the colon down to cover the part that lacks nerve cells.
An ambulance transported the baby and his dad to UPMC Children's Hospital of Pittsburgh. “Time kind of stopped there for a while,” says Michael. He shuttled back and forth to Magee with increasingly disturbing news for Meagan. In addition to an imperforate anus, Mikey was found to have an undescended testicle and two small holes in his heart. None of this had shown up on prenatal tests. “Every time he came to see me, he had more bad news,” says Meagan. “I finally told him to please stop coming over. I was a mess.”
At just 24 hours old, Mikey had his first surgery, a colostomy, so he could eliminate what he ate. All went well, and at 3 months, Mikey was ready for his second surgery. A pediatric surgeon created an opening to Mikey’s rectum, and three months after that, Mikey’s colostomy was reversed. But these measures did not seem to resolve all of his elimination issues. “We were surprised because every diaper – every single one – had something in it,” says Michael. Babies usually produce a couple of stools a day, but this was unusual.
The Witkowskis consulted a variety of gastrointestinal experts. “We received three or four different answers, but nothing seemed right,” says Meagan. Then they heard about Luis De la Torre, MD, a world-renowned colorectal surgeon, who joined the UPMC Children’s Hospital team in December 2013.
The founding director of the Colorectal Center for Children in Puebla, Mexico, Dr. De la Torre is also the inventor of a novel, minimally invasive technique for the treatment of Hirschsprung’s disease. And, having created a successful bowel management program in Mexico, he was keen to repeat that success at UPMC Children’s. The timing could not have been more perfect. “We were brought together for a reason,” say the Witkowskis.
When Dr. De la Torre arrived, UPMC Children’s already had a burgeoning colorectal program. Kimberly Cogley, MSN, MBA, had noticed during her 14 years as a pediatric surgical nurse that children with chronic bowel issues routinely were sent to other facilities. Knowing that she and her colleagues could help these children closer to home, she had visited Cincinnati Children’s Hospital Medical Center to learn more about its program and returned with a new focus to her practice.
When Ms. Cogley met Dr. De la Torre, she realized immediately that the new interdisciplinary Colorectal Center for Children at UPMC Children’s would set the standard for pediatric colorectal care close to home and for patients around the world.
Dr. De la Torre reviewed Mikey’s studies and medical history. Because of a previously undetected condition known as megarectum, Mikey was experiencing chronic fecal incontinence. Surgery to create the opening to allow elimination was not going to be successful without a reconstruction of the rectum.
Mikey and his parents met with Dr. De la Torre and Ms. Cogley to learn basic bowel management techniques and to prepare for reconstructive surgery. The Witkowskis were happily overwhelmed by the outstanding level of personal involvement and real caring that their UPMC Children’s team showed.
“They came to see Mikey every day, and Kim sent Mikey well-wishes on her own time, over the weekend, so he could see them on the computer,” says Meagan. “We eventually took a few weeks off from coming to the hospital so that we could try to adjust on our own, and Mikey was begging to go back to see her and Dr. De la Torre. He just loves them both.”
Mikey’s latest surgery in June 2014 was successful, and he has already recaptured his happy-go-lucky embrace of life. The undescended testicle was resolved surgically, and his doctors are keeping an eye on the holes in his heart, which appear to be closing on their own. Next the Witkowskis will attend a formal Bowel Management Workshop to learn how to help Mikey manage his new life with a right-sized rectum.
The Witkowskis, Dr. De laTorre, Ms. Cogley, and the other members of the team are delighted with the quick return of Mikey’s health and confidence. Mikey gave them all an indication of his good spirits just a few days after his last surgery. A true sports fan, he spotted Pittsburgh Penguins owner Mario Lemieux during the dedication of the new Mario Lemieux Lymphoma Center for Children and Young Adults at UPMC Children’s and immediately called out to him. The two played ball for a while, and Mikey beamed with happiness – as did everyone else.
Children's Hospital's main campus is located in the Lawrenceville neighborhood. Our main hospital address is:
UPMC Children’s Hospital of Pittsburgh
One Children’s Hospital Way
4401 Penn Ave.
Pittsburgh, PA 15224
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