Children's Hospital Gives Hope
After reading your issue America's Best Children's Hospitals [June 9], I felt compelled to write to you and tell you about our recent and ongoing experience with, what I believe, is the best Children's facility in the United States: Le Bonheur Children's Medical Center in Memphis.
On May 2 of this year, my 4-year-old daughter was diagnosed with a brain tumor after months of doctors' appointments and tests for vision and coordination problems. The neurosurgeon met with us and she went into emergency surgery that night. The neurosurgeon at the hospital was an adult surgeon and told us that if it was his child, he would take her to a pediatric neurosurgeon—so that initiated our quest to find the best in the country. My husband sent our daughter's MRI and CAT scan films across the country; actually speaking with many neurosurgery teams—from New York to Denver. After a week of searching, we determined the best place to take our daughter was to Memphis, to Le Bonheur Children's Medical Center. Le Bonheur works closely with St. Jude Chidlren's Research Hospital, and since we weren't sure what type of tumor she had, or what treatment (surgery, chemo, radiation) would work, we went to the place that specializes in all treatments. Once there, we met with Dr. Fredrick Boop, one of four pediatric neurosurgeons at Le Bonheur. And from our very first meeting with him, we knew we had taken our baby to the right facility. On Monday, May 12, my daughter went into surgery to have a biopsy. Several days later, the pathology reports confirmed what Dr. Boop had suspected—she had a pituitary adenoma. The staff at Le Bonheur presented my daughter's case to the Tumor Review group at St. Jude's (which consists of doctors from St. Jude's and Le Bonheur of all specialties) to determine what treatment options were available and what would most effective on a tumor this size. On Tuesday, May 22, the OR came and took her down to the operating waiting room. The surgery took less time than they thought it would and Dr. Boop seemed pleased with how things went. In the end, they were able to get 90% of the tumor and were able to remove the internal shunt that was placed a week earlier! During our stay at Le Bonheur, we heard of many stories when patients were told by other facilities that there was no hope for their children or that the procedures were too risky to perform. The neurosurgeons at Le Bonheur took on those cases and many, if not all, were successful. While in Memphis, we were fortunate to meet two families that had little girls that were diagnosed with rare brain tumors and treated at Le Bonheur over a year ago. To see how well they're doing and to talk with the parents on their experiences made a world of difference to us. The doctors and staff at Le Bonheur were second to none. Because of our extended stay at the hospital, they became our family there, and we love each and every one of them. I just wanted you to know that Le Bonheur helped save the life of our little girl and has helped countless other children. I believe that because of the skilled hands of the neurosurgeons and the devotion of the other doctors and nurses, my daughter will have the chance to be a normal, active child with a bright future. This is one parent's story and, hopefully, our experience will introduce you to a future candidate for America's Best Children's Hospitals.
Michelle Perry
Bartlesville, Okla.
Tools: 
Share
|
| Comments (7) | Print
Reader Comments
Question about the labor and delivery unit there.
Can anyone give me some info on the hospital itself? I am scheduled to have my child there where after his birth we will stay until he is a week old. He will then undergo what is called a BT shunt operation on his heart and will then be placed in the NICU for at least another week. I have heard wonderful things about the nurses and doctors there. I am just curious about the labor and delivery facility there. Is it the same as at every hospital? Thanks to whoever reads this and might can give some advice.
Persistence Pays!
This posting is in response to the question above from Betsy of Mo. My name is Mike Perry and my wife wrote the letter to US News and World Reports about our daughter Allyson who was recently diagnosed with a very rare brain tumor and who was treated by the outstanding staff at Le Bonheur Children's Medical Center in Memphis.
What I can tell you is that when we received the results from the MRI on May 2nd we immediately admitted our daughter to St. Francis in Tulsa, OK. There she underwent emergency surgery to insert a tube into her brain to relieve the spinal fluid that was building up around her brain that could have caused her to hemorrhage at any moment.
After that surgery we met with the neurosurgeon that performed the surgery to begin discussing Allyson’s MRI results in more detail. Because there was some uncertainty about the type of tumor she had they couldn’t be sure which treatment approach would be best suited for her without running a number of additional tests and without ultimately performing a biopsy on the tumor.
In order to give our daughter the best shot at successful treatment of the tumor and long-term management of any side effects, we felt we needed to be in a hospital that specialized in treating children and we wanted a team of doctors that operated on tumors in children day in and day out.
My advice, based on our experience, is to take charge of the situation and find the doctors that 1) are willing to review the results of the MRI with you now and 2) have the experience to diagnose correctly and treat effectively! How do you go about doing this? It’s going to take a great deal of work and even more persistence!
Get a handful of copies of the MRI films on CD so that you can send them to doctors you find that may be able to help. Use the internet to search for “heterotrophic dysplasia” and “low grade gliomas.” If you aren’t comfortable with this approach I would get in touch with Le Bonheur and tell them exactly what you know to-date and ask for their experts to review your films. Based on our research before and now based on our experience with Le Bonheur personally after spending four weeks in Memphis with their team, I have faith that they can help.
Dr. Boop took us in from the first moment we met with him and assured us we were in the right place and that he would take care of our daughter like she was his own! This meant the world to my wife and I during this very difficult time.
As you may have noticed from the letter, we are from Oklahoma so Memphis is about a 7 hour drive for us. In the end, we didn’t care if we had to fly across the country as long as we found the hospital and the experts that could give our daughter the best possible chance of beating this tumor! For us, Le Bonheur has proved to be “the best!”
Good luck to you and your family!
Get a second opinion for your grandson
I, too, would have difficulty waiting a month. You may not find your way to LeBonheur, but if you do, we will take good care of him and your family. It is the "LeBonheur way".
Kay Smith, RN
Clinical Educator
advertisement
