Meet our Patients
Breathing Easy
For this happy family, prenatal diagnosis and treatment of their son’s tumor and blocked airway lead to a happy outcome
Every mother remembers the moment when she first holds her baby. For Sharon Kramer that moment came three weeks after the birth of her second child, Benjamin. Little Benjamin, entered the world at 36 weeks, on June 29, 2005, weighing 6 pounds, 10 ounces. He was a 6-pound baby with a 10-ounce tumor on his neck. The tumor was discovered during a 26-week ultrasound. That early discovery allowed Benjamin and Sharon to get the care they needed to save his life. Two days after his birth, the tumor was removed. For the next three weeks he was connected to several invasive lines (hydration, medication, etc.), and he needed to stay very still while his airway healed. On July 19, three weeks after his arrival, Sharon held him for the first time. She credits the University of Michigan Fetal Diagnosis and Treatment Center, and especially the center’s director, George Mychaliska, M.D., with saving Benjamin’s life.
The tumor was originally discovered at another hospital that wasn’t equipped to handle the case. Sharon and her husband, Ed Bonsor, met Mychaliska for the first time on May 20. Sharon recalls, “There was no question in my mind that we were going to be okay. He is so highly skilled. I can’t say enough about him.”
U-M’s Fetal Diagnosis and Treatment Center is a multi-disciplinary group devoted to the care of mothers and their unborn babies with birth defects. The center provides state-of-the-art fetal diagnosis, counseling, and treatment. Sharon says, “The staff are absolutely wonderful. They are so caring and want the best for you and your baby. They make a true effort to give you as much say in your care as possible.”
Heading for the EXIT
Benjamin’s arrival was scheduled for June 29 via EXIT procedure. The EXIT procedure, or ex utero intrapartum treatment procedure, is an extension of a routine Cesarean section, where an opening is made in the anesthetized mother’s abdomen and uterus. The baby is partially delivered through the opening but remains attached to the umbilical cord and the placenta, while a surgeon establishes an airway so the fetus can breathe. Once the EXIT is complete, the umbilical cord is cut and clamped, and the infant is fully delivered. Benjamin’s tumor was very large, and blocked his airway. A tracheostomy (trach, for short) was performed by the fetal surgery team so Benjamin would be able to breathe. A tracheostomy is the surgical formation of an opening in the windpipe (trachea) through the neck. A tube is then placed in the opening which allows air to pass into the lungs.
Benjamin’s tumor was successfully removed two days later, and then Benjamin spent five weeks recovering in the Holden Neonatal Intensive Care Unit. The caring U-M staff helped make that time easier. Sharon says, “I felt very supported and cared for.” That care extended to the whole family, including Benjamin’s big sister Sierra. Sharon says, “The nurses were so kind to Sierra. They made a concerted effort to include the whole family.”
Five weeks and one day after his EXIT procedure, Benjamin’s parents were able to bring him home. Benjamin still had a trach and a feeding tube, but Sharon was able to successfully breastfeed him. His feeding tube was disconnected just a week after coming home from the hospital.
Making Adjustments
There were some unforeseen challenges. That November Benjamin had surgery to help correct laryngomalacia (extra tissue in the airway). Benjamin also had gastric reflux disease, which caused increased secretions leading to more frequent suctioning of the trach. As Benjamin grew, he also healed. In July of 2006, his family was able to plug his trach for a full day while he was awake. The trach was finally removed on August 30th, when Benjamin was 14 months of age.
This June, Benjamin will celebrate his second birthday. He will have one more surgery to close the opening from his trach. That little mark on his neck is the only indication of what he has been through. If you meet Benjamin, see his smile and hear his giggle, it is easy to forget what he experienced in his first 14 months, but his parents don’t forget. “We take delight in him every day,” says Sharon. “We are so thankful for the expertise of Dr. Mychaliska and the staff at U-M who helped make Benjamin’s life possible.”
