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Urologic Surgeons Restore Form and Function for Young Patients

NEW YORK (Apr 21, 2014)

Like many newborns, Max came into the world wailing in a New Jersey hospital in August 2007. But doctors and nurses soon found a few differences.

He did not have an anus. His bladder was not functioning properly. His spinal cord was shorter than normal. Within 24 hours of his birth, he had surgery to create a colostomy for the collection of bowel wastes. During his stay in the hospital's neonatal intensive care unit, a parade of specialists came through to evaluate Max on a regular basis.

Shumyle Alam, M.D., and Max
Max has benefited from the skills of reconstructive urologic surgeon Shumyle Alam, M.D., who recently joined NYP/Morgan Stanley Children's Hospital

His parents, Allison and Colleen, learned he had VATER association, which stands for "Vertebral, Anal, Tracheal, Esophageal, and Renal" abnormalities. Max did not have all of these problems, but his urinary and bowel function definitely needed to be addressed. "When the doctors told us what could possibly be in store for Max, it was terrifying," recalls Allison. "Colleen and I could have been diagnosed with post-traumatic stress disorder. It was a very difficult time."

Through Allison's extensive research, they learned that Cincinnati Children's Hospital Medical Center was a leader in the treatment of children with VATER. There, at six months of age, Max had "pull-through" surgery to create an anus and reverse the colostomy. And that's where they met Shumyle Alam, M.D., who assessed Max's urinary function.

It was the beginning of a long-term relationship, one which became even easier to maintain when Dr. Alam moved to NewYork-Presbyterian/Morgan Stanley Children's Hospital in February 2014 to build the reconstructive urology program. Patients come to Dr. Alam from across the country and around the world for his renowned expertise in performing surgeries that restore form and function and improve quality of life for children.

Pediatric Urology at Morgan Stanley Children's Hospital The Division of Pediatric Urology at NewYork-Presbyterian/Morgan Stanley Children's Hospital has been an internationally recognized Center for Urinary Tract Reconstruction for more than 30 years. A dedicated team of pediatric urologists performs complex reconstructive surgery for congenital disorders, including abnormalities of the bladder, urethra, and genitals. They also "re-operate" when patients who have already had a urologic surgery require an additional repair. The team has years of experience and expertise in all aspects of this complex field and collaborate with other specialists to achieve the best surgical outcomes.

Dr. Alam completed his residency at Cincinnati Children's Hospital and continued learning there under the guidance of Alberto Pena, M.D., who created the pull-through procedure, and his partner, Marc Levitt, M.D. Dr. Alam soon became widely known for his expertise in urinary and anorectal reconstructive procedures.

"The care of these patients requires a team approach to achieve good function and cosmetic appearance so these children can lead active, productive lives," said Dr. Alam. "For many children, we may need to see them periodically throughout their lives. Our team provides multidisciplinary medical, surgical, and supportive care for as long as our patients and their families need us."

Reconstructive procedures performed by Dr. Alam and his fellow surgeons – including Pediatric Urology Chief Pasquale Casale, M.D., and pediatric urologist Sarah M. Lambert, M.D. – include:

Treatment of disorders of sexual development

The management of children with disorders of sexual development, such as ambiguous genitalia, requires a multidisciplinary effort that is best addressed by an experienced team. The team at Morgan Stanley Children's Hospital includes specialists from urology, endocrinology, and genetics. Care is also provided to perform vaginal reconstruction for girls with an abnormality known as "mullerian failure," and those with Mayer-Rokitansky syndrome, where there is abnormal development of the vagina.

Repair of cloacal exstrophy and bladder exstrophy

Surgery is often necessary in children and young adults born with congenital abnormalities such as bladder exstrophy, posterior urethral valves, and neurogenic bladder. Morgan Stanley Children's Hospital is one of only a few medical centers on the East Coast with an interdisciplinary program in place to treat exstrophy: rare and complex disorders in which the abdominal wall fails to close during fetal development, the intestine may be abnormally connected to the bladder, and the urethra and genitals are not completely formed. Exstrophy must be diagnosed before birth, because surgery must be performed in the first 24 hours of life. Dr. Casale trained in exstrophy repair under Michael Mitchell, M.D., who is world renowned for his work caring for patients with these disorders. Dr. Alam trained with Dr. Pena and Curtis Sheldon, M.D., who pioneered novel treatments for urinary and bowel reconstruction in children with these conditions.

Repair of bladder problems in children with spina bifida and anorectal malformations.

Spina bifida and anorectal malformation can have profound effects on bladder and bowel function, and children born with neurogenic bladder related to these conditions may benefit from bladder reconstruction. Pediatric urologists at Morgan Stanley Children's Hospital have experience in "appendicovesicostomy," a procedure in which a channel is constructed out of the appendix to facilitate the insertion of a urinary catheter to empty the bladder. This technique enables many patients to perform their own catheterizations. Often patients with neurogenic bladder will also require a Malone procedure to facilitate emptying of the colon. The appendix can be used for creating both channels – something that is not done in many other institutions. The Division of Pediatric Urology partners with General and Colorectal Surgery, Neurosurgery, Nephrology, Orthopaedics, and Physical Medicine to help achieve the best outcome for each patient.

Hypospadias repair

Hypospadias is one of the more common birth abnormalities of the genitals among male infants. In boys with hypospadias, the urine tube (urethra) is short and does not come out to the end of the penis. Surgery for children who need it is recommended between 6 and 12 months of age. At Morgan Stanley Children's Hospital, highly experienced surgeons perform reconstructive surgery for hypospadias to restore both cosmetic appearance and optimal function. They also have a special practice devoted to re-operative hypospadias repair, and they receive patient referrals from the state and across the country.

Surgery for children with end-stage kidney disease

Twenty-five percent of children who need a kidney transplant or dialysis due to end-stage renal disease have urologic issues that require surgery to correct. Reconstructive surgeons perform procedures before and after transplant to enhance the survival of a transplanted kidney, reduce the risk of infections, and improve the urinary function of these children.

The Division of Pediatric Urology is also developing a transitional program to facilitate the care of children and adolescents with chronic urologic disorders as they move into adulthood, linking them with the specialists they need and teaching them to advocate for their own healthcare needs. This interdisciplinary program addresses all aspects of health, including kidney health, nutrition, general medicine, urology, and sexual and reproductive health.

Max's Journey

In the spring of 2013, when Max was five years old, he and his family – including his one-year-old sister, Elizabeth, and his grandparents – once again made the trip to Cincinnati to have another set of surgeries. Setting up a household in an apartment in the area, they stayed there for three months as Max underwent a variety of procedures to reconstruct the neck of his bladder, a Mitrofanoff appendicovesicostomy to drain his bladder through a port in his abdomen, and an approach called the Malone procedure to create a port in his belly button to give him enemas to help his bowel function. "It was really tough, and he amazed me every day," said Allison, who stayed in Max's room with Colleen while her parents watched their daughter in the apartment.

Today, Max is a six-year-old who enjoys Star Wars and Legos. Despite his shortened spinal cord, he has full mobility, balance, and sensitivity. He has to avoid certain contact sports, but is otherwise an active kindergartener. "He's a regular, super happy kid who appears totally normal," said Allison. His school nurse drains his bladder through a catheter during the school day.

Allison and Colleen were thrilled when they learned Dr. Alam moved to NewYork-Presbyterian/Morgan Stanley Children's Hospital, just over an hour from their home. "Dr. Alam has always been available whenever we've needed him," Allison maintained. "He's there all the time for all of the kids. There's honest-to-God love there."

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