This is a fact that we did not know before our daughter was diagnosed with a brain tumor, but this has made all the difference in the world for her outcome. We were diagnosed at our local “children’s” hospital (Erlanger Children’s/TC Thompson) and met that same day with a neurosurgeon. We assumed, as you would, that the neurosurgeon meeting with us in a children’s hospital would be pediatrics trained but we later learned that was not the case. We learned this from people outside of the hospital but no one in the hospital ever told us that he was not specialized.
We were blessed to be “accidentally” discharged from the local hospital after some miscommunication between staff. That blessing allowed us to do a small amount of research the next day when our pediatrician told us we had to go back to a hospital but we had options. We chose Cincinnati Children’s Hospital – ranked as the #3 best children’s hospital in the country, #2 in cancer care, and #6 in neurology and neurosurgery. Located only a 6-hour drive from our home was one of the best hospitals in the country, and in the world, and no one from our local hospital ever mentioned possibly transferring to a top hospital for our complex medical needs.
When we returned home after 7 months in Cincinnati, we tried to use our local hospital for chemotherapy infusions and emergency needs. We learned quickly that this was not going to work for two main reasons: 1. They do not have the specialized training that our daughter needs, and 2. They were not willing to work with our primary team of specialized surgeons and oncologists in order to care for our daughter. Communication between Erlanger Children’s and Cincinnati Children’s was non-existent and Cincinnati was often calling me for updates because they were not getting them through the team at Erlanger.
Last summer, Tillery was sick for 3 months with fevers and vomiting and I was made to feel that I was an overreacting mama when in reality, my daughter was growing a giant pseudocyst of infection in her abdomen and the infection was running to her brain but the proper testing wasn’t happening to be able to diagnose it. When it was found, we were not told by a surgeon or the oncologist who ordered the test, but by a nurse who nonchalantly told us that an x-ray showed a mass. Our daughter has cancer and they off-handedly said there was a mass in her abdomen and then it was HOURS before we saw an MD to discuss it! By the time the non-pediatrics trained neurosurgeon finally came to see us the next afternoon, a plane was already on its way from Cincinnati to get us and time was already being slated in their operating room for her.
Our team at Cincinnati Children’s is phenomenal. They have a collaborative approach and her oncologist and neurosurgeon meet weekly to discuss Tillery and other neuro-oncology patients. They take her whole health into consideration, like this upcoming surgery that was supposed to be a more major surgery but because of her huge strides developmentally, they are holding off on part of the surgery to allow her to continue to progress.
While I love our team at Cincinnati Children’s, I’ve also been pleased with another hospital just a few hours up the road. We travel weekly to Knoxville to East Tennessee Children’s Hospital for chemotherapy and their neuro-oncologist is wonderful. They also have 2 pediatric neurosurgeons who can advise on those needs as well. Communication between the two hospitals is so great that the oncologist in Knoxville emails our oncologist in Cincinnati weekly and copies me so that I’m also in the loop of what our teams discuss. Since November, East Tennessee Children’s has been our hospital for emergencies, as well, since they have wonderful open communication with the team in Cincinnati. Unfortunately, because of the distance, we cannot have an ambulance take us to East Tennessee Children’s so in order to go there, we must drive her the two hours to the emergency room.
We are saddened that Chattanooga, a city that touts being family friendly and a top Southern travel destination, does not have an adequate children’s hospital to care for our child. This region is large enough to warrant a hospital with pediatrics trained specialists to care for local kids. Erlanger Children’s tag line is “The right place for kids. Right here at home.” but we have seen that that is not the case. We regret that we are going to follow in the footsteps of many others we have heard of in this area with children with complex medical needs, and are moving from a town and a job that we love. We aren’t moving all the way to Cincinnati because it doesn’t require that. Cincinnati Children’s can still manage Tillery’s care while working through a children’s hospital that is both specialized and willing to work with her primary team. We will be moving to Knoxville next month for the safety of our daughter.
Parents, always question and be involved in your child’s medical care. If something doesn’t feel right, speak up or go somewhere else. Never feel like you don’t have options. Sometimes you just have to work really hard to find them and make them work.
To those of you in the Chattanooga region, demand better of your children’s hospital.