"Your Doctors Work Miracles!"
July 10, 2015
Topics: NICU (Newborn Intensive Care Unit)
Helen Grace (Ellie) was born May 24, 2011, at St. Vincent Carmel Hospital. Our fourth child and my third scheduled C-section, we were confident and experienced parents, and with my healthy pregnancy we expected this delivery to proceed as the others had. We looked forward to meeting our little girl! Our confidence was soon shaken when during her first newborn exam the NICU staff noticed a mass on the outside of her body. She was transferred to the NICU at St. Vincent Women's Hospital within hours, and in those next two weeks we would learn she had a large perineal hemangioma and associated PELVIS syndrome, resulting in a tethered spinal cord and non-traditional bladder exstrophy. This was a rare disorder and managing her care would require expertise, innovation and physicians up to date on the latest research and procedures. Her pediatrician, Dr. Jill Mazurek, immediately set her up with Riley Physicians. Ellie was now a Riley kid!
First, we needed to manage the hemangioma. A hemangioma is a vascular birthmark, and one as large as hers could pull blood from other organs which can be life threatening. Dermatologist Dr. Anita Haggstrom is an expert in the care and treatment of hemangiomas. She started Ellie on a medication called propranolol to keep the hemangioma from growing. Once we had it under control we began scheduling surgeries. Under the excellent care of Riley Pediatric Neurosurgeon Dr. Jodi Smith, Ellie’s tethered spinal cord was repaired. Then it was time to work on her poorly formed bladder and bladder exstrophy. Riley Urologist Dr. Richard Rink is one of the very best in the field! He repaired the initial exstrophy—difficult work when it is surrounded by a vascular hemangioma. It was his intent to finish her bladder repair around the age of 3.
We thought we would get a little break from our frequent appointments and procedures, but routine pathology from this surgery showed Embryonal Rhabdomyosarcoma of the Bladder, Stage 3. We welcomed Riley Hematologist/Oncologist Dr. Holly Knoderer to our care team. Ellie had 48 weeks of chemotherapy and Dr. Rink performed a 13 hour surgery to remove her bladder and all of the cancer. She is currently two years cancer-FREE! This past May, Dr. Rink performed yet another procedure, creating a Continent Urinary Reservoir to replace her urostomy bag, which will provide Ellie with a much better quality of life.
Ellie’s care is complex. She has been in and out of the hospital most of her four years of life, and without the compassionate care and the expert knowledge of new, advanced medicine, and the willingness of her entire care team to work together and communicate with each other from their various fields, we know we would not still have her with us.
Thank you Riley! Your doctors work miracles!
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