When Kathy and I first decided to have a baby, we read articles that said you should pick out your pediatrician ahead of time. By interviewing before hand, you find out things like when and where the office hours are, whether you click with the staff, and you are not meeting the doctor under the stress of a sick child. Also, the OB-GYN is the the mother's physician, not the infant's, so it is smart to line one up for well child check-ups. What the articles don't mention is what to do if your child is born with a life threatening birth defect.
As soon as the baby was born, the pediatrician that we had selected evaluated her and determined she should be transported to Crouse Irving Memorial Hospital in Syracuse to their Neo Natal Intensive Care Unit. She had several operations and was in the NICU for 11 weeks. During that time Kathy and I realized that Becky would need to go to doctors and clinics in Syracuse all the time. We live half way between Utica and Syracuse, NY and felt we would need a Pediatrician in the Syracuse area. Ironically, the pediatrician that we had picked out in Utica is highly regarded, especially by parents of handicapped children, and would have been a great choice had we not needed to be in Syracuse.
At that time, the doctor who had made the biggest impression on us was our Neurosurgeon. He had encouraged us to believe that we would be able to handle having a child with Spina Bifida. He was the first to tell us to start thinking of her as our daughter Becky, and not as a patient in the NICU. Our Neurosurgeon gave us a referral to a pediatric group. When Kathy called, they did the usual screening and told her that because we lived outside their area they wouldn't take Becky as a patient. We were devastated.
We knew we wanted to go to the pediatrician that he recommended. When we told him we had been rejected by that group, he made a call and we were in. That call has made all the difference.
We got to know our new pediatric group quite quickly. We had only been home from the NICU with Becky for about a week when she developed a urinary tract infection. High fever, high heart rate, we were scared. We made an emergency visit to the pediatrician, and they sent us by ambulance to SUNY Health Science Center. This was our first hospital stay outside the NICU and it was like culture shock. We were used to one set of routines and this hospital did things very different. Our pediatric group really helped us to get through that hospital stay.
Becky got better and Kathy and I learned a lot from that visit. First, we learned that medicine was as much an art as a science, and that our daughter was in good hands even if they didn't do things the way we had been taught in the NICU. We also learned what we call "med-speak." We tried to learn as much of the language and vocabulary that doctors and nurses use, and use it ourselves. Sometimes, especially when we're giving Becky's medical history, people even ask us if we work in the medical profession. Finally, we learned about the hospital organization, and how our own doctors fit in.
With Spina Bifida came a host of other complications. Becky had a G-Tube and then a button; a trach tube; a ureter reimplantation surgery; decompression surgery; and tubes in her ears as well as other OR visits. We got used to having surgeries, procedures, and being in the hospital. In fact, we were seeing our pediatrician and other doctors at least once or twice a month. Becky didn't have a "well-child" check up until she was almost three years old.
Sometimes we asked for referrals to specialists, especially if the one we were using was leaving town for another job. Even though many of our referrals to specialists came through the Spina Bifida Clinic, we always had copies of their reports sent to the pediatrician. Whenever we went to the pediatrician we always made it a point to fill her in on our latest appointments, sharing both information and our personal take on how things were going. Often the ENT doctor or the Gastro doctor would prescribe a medication. When time came for a refill we would usually have that script written by our Pediatrician. Our pediatrician would typically check with the specialist if a change was needed. Also, that way our Pharmacist only had one place to call and check on things. In fact, following our pattern, we only use the one Pharmacist.
Our pediatrician and her group are just what we needed. They work together so well that when our own doctor isn't on call we never feel like we're getting second best. All of the doctors in the group have seen Becky both in the office and in the hospital. They consult with one another and reach out to ask questions of Becky's specialists. Or doctor never hesitates to get on the phone to talk to the neurologist with a question. We always feel confident that the prescribed treatment is based on solid information. Even though Becky's chart is that big thick one on the bottom shelf, they always seem to have read the file whenever we are there. The questions they ask us are well-informed. Their staff is well organized and friendly. They do not make us wait long in the waiting room, always a plus with a sick child.
We have come to believe that using our Pediatrician as a clearinghouse for all Becky's medical information is the right plan. This way we aren't the only ones who have the big picture. Specialists have come and gone, but our own doctor has always been there. This long standing relationship has benefited us in several ways. Kathy and I have learned how to give a pretty decent medical history both over the phone and in person. Our pediatrician has learned to trust us and listens closely when we talk about our daughter's health. The communication has become even more effective over time.
When you have a child with all the needs that Becky has, you need to feel that there is someplace or someone that you can go to. You need to feel that there is help and that there are answers. At the very least you need to feel that somebody cares about your child. Our pediatrician and her group have always demonstrated compassion and feeling. We have always felt like they care about us.
Now that we have another daughter we continue to see the benefit of consolidating our medical care. Sarah has no special medical needs and probably could see a doctor in Oneida where we live. But, as is often the case in families, when Sarah gets sick Becky will come down with something. Many times we are actually able to narrow down what one daughter has by looking at the sibling's symptoms. It is worth it to have them see the same doctor.
Becky is now thirteen years old and has made a good deal of progress, including walking. She is now in Sixth Grade. Her little sister Sarah is in Fifth Grade and very precocious. We live in fear that she will play doctor in school and teach the other kids how to catheterize Barbie...Although if either one of them grew up to work in the medical profession we wouldn't be surprised.