Children's Hospital Gives Hope

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Discussionadvance of 11:22AM January 06, 2010

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.

Krystal Jones of MS 10:33AM January 19, 2009

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!

M. Perry of OK 11:32PM July 29, 2008

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

Katherine Smith of TN 10:15AM July 21, 2008

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

Katherine Smith of TN 10:14AM July 21, 2008

My 14 month old grandson and his family were on vacation visiting us. He had a seizure on July 7, 2008. The local hospital did a CT scan which revealed a "spot" . They sent him to a larger regional facility where they did an MRI and EEG. The preliminary diagnosis was 1) congenital gray matter migration failure (heterotrophic dysplasia or 2) low grade, slow growing tumor, glioma.
They flew back home to the west coast and took him to his pediatrician to obtain a referral to a neurosurgeon. They can't get an appointment until Aug. 13.
Would you please give me some advice? I think nearly a month is too long to wait to see the specialist.

Betsy of MO 3:16PM July 19, 2008

I want to thank this family for taking the time to recognize our hospital and the miracles that happen here. I too am very honored to serve the children and their families when they need us most. I am also blessed and proud to work in this facility with the most caring and loving staff possible.
Rebecca P Sartini,RNC
Clincial Director
Neonatal Services
LeBonheur Children's Medical Center

of 10:36AM July 18, 2008

As a registerd nurse at LeBonheur Children's, thank you for taking the time to write about your experience with us. I am so proud to work with our execptional staff of physicians and nurses.
CJ Kirk, RN
LeBonheur Children's Medical Center
Neonatal Intensive Care Unit

of TN 1:09PM July 17, 2008