A Grateful Family…
Our tall, athletic, and cheerful eight year old daughter Gabby had just started her first week of third grade, and our small family of four (Mom, Dad, Gabby, and Bruce, our dog) was settling back into the school time routine. By the end of the week, Gabby was not feeling well, so we kept her home from school for a couple days with what we thought was a flu. Our lives changed profoundly on Saturday morning when Gabby had a seizure and was rushed to the hospital. She had a very high fever, was very flush, and was not conscious. The local hospital felt that they could not adequately treat her worsening condition, so she was transported to Texas Children’s Hospital in Houston, about 40 miles away from our home.
Our daughter was very sick, and over the next several hours the Pediatric Critical Care team worked to stabilize her, medicate her, and insert breathing and feeding tubes. It was a painful, long period of waiting for my wife and I, and when we finally were allowed to see our daughter, we became fully aware of how serious her condition was; she was in a coma, and very close to needing life support. It took several days to stabilize and diagnose our daughter.
She had experienced a rare over-reaction of her auto-immune system through an acquired disease called HLH. This condition caused her immune system to ignore a simple viral infection, and produce an inappropriate response to an unaffected area. In Gabby’s case, this was her skin. So besides the HLH, which had caused trauma to her brain and body through inflammation, a secondary condition called Stevens- Johnsons syndrome had blistered a great deal of her skin with most areas equivalent to second and third degree burns. It was heartbreaking and horrific. She was placed on heavy sedation and pain medication for over a week, at which point her skin wounds presented a high risk of infection, and Texas Children’s Hospital was not equipped with a pediatric burn unit. A statewide, then nationwide search began for a hospital that could best treat her skin and also expertly treat her other issues, and ten days after her initial seizure, our daughter was transported by a Life Flight jet from Houston to Detroit to be cared for at Children’s Hospital of Michigan (CHM).
My wife and daughter arrived at CMH around 8:00 p.m. and as my daughter was prepped for surgery, my wife was quickly escorted to the Ronald McDonald House of Detroit (RMHD), and although it was late in the evening, the staff at the House graciously welcomed and comforted her, and provided a fantastic and convenient room for our stay.
The priority for the burn unit at CHM was to surgically remove the dead skin from her body, and bandage her in similar fashion of a burn victim. Over two weeks of CHM’s expert skin care, as well as a collaboration of many specialists to reduce her levels of sedation and pain medication, we slowly got our sweet daughter back. Each day has been a challenge for her, but her progress has been amazing, and now, after only two weeks here at CHM, she is well on her way to a full recovery.
Because of the convenience of RMHD’s location, my wife and I were able to take shifts and spend every moment at our daughter’s bedside, at both the ICU and at rehabilitation.
This was very important to us, since she spent a great deal of her initial recovery drifting in and out of consciousness. We are grateful that we were able to focus our energy on our daughters recovery, and not have to worry about coordinating accommodations for a stay of unknown length. This is the true beauty of what the House provided: a warm welcome, a friendly environment, a comfortable room and facility, and peace of mind knowing that we were always close to our daughter. We will forever be grateful to RMHD and their fantastic staff.
Our daughter has remarkably progressed to the point where we are planning our transfer back to Texas Children’s Hospital in Houston for further rehabilitation. It has been over a month since our journey began, and just over two weeks here in Detroit. We are thankful. We were very close to losing our daughter, and through a collaborative effort of many people, over many miles, we have our beautiful Gabby back.
We anxiously await the day when we can return home back to sweet, normal life. Gabby will receive further treatment for HLH, and with close monitoring of her immune system, should be able to lead a completely normal, healthy life. We consider ourselves fortunate for many things, one of which was our warm welcome and stay at the Ronald McDonald House of Detroit. Our sincere thanks go to all of the staff and volunteers we have met during our stay.
Todd, Becky & Gabby Berger