As many of you know, we had had tons of bad experiences with Children's Hospital, from a broken leg, to doctors who didn't show up for appointments, to 3 to 4 hour waits for simple follow ups, to busted mouths, to incorrect diagnoses and prescriptions, just to name a few.
One of the major things that happened that really pushed me to start looking for a new hospital began when Christian was about 4 months old. He had his cleft lip repair surgery when he was 3 months old, and on one of the incisions, it looked like he might have had an infection under the skin. This was on the part of his head where the skull is missing, next to his right eye, so I was concerned that it was so close to his brain. We took Christian to the ER on Saturday evening and were there until around 3am. The doctors who saw us told us that it didn't look like an infection to them, but that I needed to follow up with his plastic surgeon just to be sure. The plastic surgeon wanted to do a CT just to be sure, because we needed to know FOR SURE if there was an infection there. So we went back for a CT scan a few weeks later. I never got a call to let me know the results, so I began calling and e-mailing as soon as I knew the results would be in. They were pretty rude about me asking to know the results of the CT, but I persisted. The receptionist finally told me that there wasn't an infection, but that the doctor was concerned about fusion of the skull so we needed to come back in.
We went back in a few weeks later and the plastic surgeon informed us that on the CT it looked like some of the plates in Christians skull, namely those next to the absent skull, were closing too early, a condition known as craniosynostosis. He said that when the plates fused too early, they caused introcranial pressure that can cause brain damage if left untreated. Eventually Christian's skull would start growing in a funny shape. The treatment would be a 7 to 9 hour surgery where the plastic surgeon and a neurosurgeon would cut open Christian's skull, remove a piece from his ear to the top of his head, to his eye socket, and reattach it with metal screws and wires.
I literally almost fainted. Christian's nurse ran over and grabbed Christian out of my arms and the doctor jumped up to grab me as I was falling backwards. He asked if I was ok, and for a minute I couldn't even speak. I finally started asking some questions, but wasn't really sure what to say. The doctor then told me that he wasn't sure just yet that this is craniosynostosis and he just wanted to keep an eye on it for now. He also explained to me that craniosynotosis is a fairly rare birth defect that was unrelated to Christian's cleft. Immediate red flags started flying in my head. I just could not believe that Christian had a birth defect that only 50 people in the world had AND another non-related birth defect that was also fairly rare.
I started doing my own research on the matter and found out that one way that doctors find and diagnose Craniosynotosis is to look at a growth chart of the child's skull over time. If it wasn't growing, or not growing on the normal curve, that indicated craniosyntosis. I called Christian's pediatrician and asked for a copy of his head growth chart. At every well baby visit they had measured his head and I knew that it had always measured normally. Sure enough, when I got the paper, Christian's head growth was perfectly normal. Another red flag
Two months later, we went back to the plastic surgeon to check on the craniosynostosis thing. The doctor walked in the room, glanced at the CT scan we had done 2 months ago, ran his hand across Christian's head and in less then 2 minutes in the exam room, he says "Yes, it's craniosynotosis. We're going to have to do the surgery." He began to tell me where to go to schedule the surgery after I left the exam room. Again, I was stammering and stuttering, but not so close to passing out this time. I told the doctor that I needed more time to think things over. He agreed, but warned me that this surgery had to be done by the time Christian was a year old. He also never asked for Christian's head growth chart, and I didn't offer it to him because I wanted to test him and see what he would do. By this time, there were so many things that just didn't add up, that I knew I couldn't let Christian have the surgery until I knew more.
I immediately started looking for a doctor outside of the network to get a second opinion. I finally found a group of doctors at UT Medical Group in Memphis, Tennessee who hold a craniofacial clinic once a month. We were placed on the schedule for the October Clinic to get a second opinion.
Christian was a trooper on the 3 1/2 hour car ride. We only stopped once to feed him and grab us some breakfast, and he never complained the whole way. When we finally got there, we were some of the first people to be called back. A group of doctors (5 if I remember correctly) came in, looked over Christian's medical records, took pictures of him, asked us a lot of questions, and made a determination that Christian did not have craniosynotosis and said that "Under no circumstances would I suggest that you allow him to have the surgery." The doctors also said that they knew Christian's plastic surgeon, and that they had no idea why he would diagnose Christian with this birth defect.
That day felt like a 5,000 pound load lifted off my shoulders! I had been so worried and scared that Christian was going to have to endure such a painful and residual surgery for the last 3 or 4 months. It felt amazing to have that worry lifted.
But, that visit created a new problem. We went back to our plastic surgeon and told him what we had found out, and although he said that he disagreed with the UT Medical Group findings, and that Christian still needed the skull surgery, he didn't push the craniosynotosis surgery any further. This left me with a deep mistrust for that doctor. He had always been one of the nicer doctors that we had, and he had done a miracle with Christian in his lip repair surgery, but still, my gut was telling me that I could not let this doctor work on Christian anymore.
So, that's just some more insight into the deep mistrust and dislike I have for Children's hospital. I learned fast as a mother to trust my instinct when it came to Christian. When orthopedics broke Christian's leg, I argued with them for an entire appointment about it. They assured me that his leg was not broken, but I didn't let it go until they did an X-Ray. Low and behold, Christian had a fracture in his tibia near his knee.
So, now, I have spent the last 6 months researching and setting up consultation appointments with new hospitals, all out of state, to try to find Christian the absolute best care possible, with doctors who will treat him as if he is their own child when he is under anesthesia and the knife. Christian is still facing 20, 30, maybe even 40 or 50 surgeries in his lifetime, and I want a doctor who is going to do the VERY BEST job possible with absolutely nothing being done unnecessarily and no mistakes being made. Christian can't afford unnecessary surgery or mistakes, and he definitely doesn't deserve it.
Right now, we are looking into two hospitals in Ohio, Shriner's and Nationwide Children's Hospital. We have consultation appointments scheduled for August 27th and 28th as of right now. This is about a 7 to 9 hour drive. We have also begun looking into Milton Hershey in Pennsylvania, although I haven't yet contacted anyone there. I am researching and looking into every possibility for which hospital to go to.
My criteria are simple and I don't think Christian deserves any less. I want doctors who care about my son, and don't see him as just another surgery, another day on the job., who are extremely skilled in their profession. Who take the time to listen to me and take into consideration my feelings on procedures and Christian's care. I want a hospital I can trust to do what is best for my son and my family, and who doesn't make a stressful and painful situation worse or use Christian as a Guinea pig or a paycheck.
Although Christian's insurance covers almost everything that we have done in Tennessee, it covers zero out of state medical costs. But there is no way that I will sacrifice the best care possible for Christian, no matter what it costs us. Where ever we choose to move Christian's care, his insurance is not going to cover any of it. But that is not even a consideration in this. What matters most is Christian and getting him the absolute best care possible.
|Photo of a child with the type of craniosynotosis that Christian's doctor said he had. The doctor said that Christian's forehead would eventually begin jutting out like this.|
|This is Christian at 3 months old, days after his cleft lip repair. I cannot imagine putting him through this unnecessarily.|