A bit of history about our Doctors...
We are forever grateful to all of the doctors, surgeons, nurses, assistants, and technicians that have helped us over the years! Even as time moves on and needs change we will never forget all the people who have helped us.
In the beginning we had some very unusual circumstances, and it was tough to know who and where to turn to for help, and what to do when we were unhappy with the way we were treated or uncomfortable with the way something was being handled.
When I was pregnant with the twins I had the best oncologists I could've ever hoped for! When I went to get a level 3 ultrasound to check on the babies that was a life changing day. That day it was confirmed that the babies were conjoined twins (I was 5 months pregnant). While the ultrasound technician was talented and very nice, the Dr. was not someone I wanted to continue to see. He strongly kept telling me that I had "options" about this pregnancy even though they were 5 months old and that they were highly unlikely to make it or would likely have many problems.... The twins were diagnosed with a condition called, "Twin Transfusion Syndrome" (a condition where one twin thrives taking most of the nutrients and the other twin diminishes). Even if I hadn't been this far along and even though the babies did have a poor outlook, I could never choose to take their life away! In my heart it was in God's hands to decide what the future held for our family. As it turned out that Dr.'s diagnosis ended up being wrong - they never had the syndrome afterall. Sara just wasn't growing as big as Alyssa because she had an extremely tiny umbillical cord (When she was born at the University, they actually wanted to save it for medical/educational purposes).
We were also seeing a surgeon who was highly qualified and excellent at his profession, but was extremely arrogant and hard to deal with. This made us feel very frustrated. There were problems right from the start when we were trying to stress our concern that the babies may be born before he got a team together to prepare for the birth! We tried to make the best of things and didn't know what we could really do in this situation. After the girls were born, we also had a hard time expressing our concern about developmental delays, etc. that may occur if the separation surgery was put off too long. It was already hard to deal with some of the everyday issues like how to do diapers, clothing, and more... but although we knew they needed to get bigger before surgery could be attempted, we felt like our concerns weren't being properly addressed. The orthopedic Dr. also expressed his shared concern about prolonging surgery and helped us in this area. We were never even included in a major surgical decision that would affect both girls for the rest of their lives - as their parents, we felt like we should have at least had some input on that decision. Even after the initial separation surgery, their surgeon continued to treat us with deliberate disregard, was difficult to talk with, and constantly made us feel snubbed (perhaps because of our decision to keep the media out of everything???). This was a stressful situation and we wanted to try and find another general surgeon for the girls. Some of the Children's Hospital staff in that clinic told us that we wouldn't be able to find another experienced pediatric surgeon... We didn't care if we have to travel in order to get what the girls may need, but we did want someone local to count on if there was ever a sudden problem that needed attention. One of the nurses who was more understanding of our position gave us some info. and referrals to some leading specialists in other states in case we ever wanted them. The surgeon we ended up finding on our own was in private practice but happened to be in the same hospital! - He is now currently retired. (At the present time we are still looking for another general surgeon).
My advice to anyone seeking a specialist:
I think it's so important when you're going to pick a specialist to see regularly that you come home feeling that you got something out of the visit and that you're dealing with a trustworthy individual. We have seen so many different kinds of specialists over the years for these girls! (primary Dr.s, orthopedic Dr.s, gastroenterologists, dieticians, urologists, cardiologist, nephrologist, endocrinologists...) As a parent, you have a responsibility to your kids to make sure they get what they need. If you feel you aren't getting the help you need then that person isn't doing what he or she is getting paid to do. If you can't ever get in to be seen in a reasonable period of time, or it seems like there's no benefit from your visits, then let them know how you feel and that there's a problem. If nothing changes, consider going to someone else. You are accountable for your own health and the health of your children, so it is ultimately up to you to decide which specialist you choose.
If you have had or are having a problem dealing with a doctor just remember you CAN always get a 2nd or 3rd opinion and any good doctor will NOT hold that against you. I think as long as you are respectful in doing so, it shouldn't hurt anything except maybe an ego. One Dr. may see things differently from another, be able to communicate better, or give you some valuable information. Especially when you are dealing with a life changing decision. If you wouldn't buy the first car or house you look at - why should you take the advice of one person in the whole world without checking out some other options first? Some people don't have many choices due to insurance policies, or where they live, etc. but everyone deserves the right to be treated respectfully.
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