I realized that I kind of left the last post right in the middle. When I was first writing it on my lunch break, doing so made sense to me. The next part of the story all go together, and I don't want these posts to be extremely long. Now, back to the story.
When Gideon's surgery was completed the set us up in a recovery room to wait until Gideon was stable enough to go home. While there, the nurse in charge of the Cleft Clinic came to the room to talk to us about what had happened that day. She also said that she would call a geneticist to come talk to us.
The geneticist's office was only a block or two away, so we did not have to wait very long. He showed up shortly after the nurse had talked to us. They took a blood sample to test if Gideon did have the suggested disorder.
The doctor then sat down with us to briefly answer our questions and outline what to expect from there. At the time, he would not confirm that Gid had Cri du Chat, but he did say that our son had many of the characteristics and symptoms. The test would take up to 6 weeks for us to get results back. Once he had them, his office would call us to setup a meeting with the doctor to go over those results.
Fast forward to our appointment with the geneticist. The doctor confirmed what we had already decided was fact. The way that he did so was what was different than most stories that I hear, even of babies as recently as this year.
He did what any good doctor will do, he gave us the facts, told us the unknowns, and encouraged us to work our hardest and be the best parents we could be for our son.
All of the research and medical data about children with CDCS was about 35 years old. The syndrome was not separated and defined until the 1960's. medical advancement's had nullified much of that research. The doctor did tell us what that research said, but he reminded us of these facts and that instead of expecting the worst, we should just deal with each challenge as it came up. He had us setup appointments with other doctors to check the general issues that kids with CDCS had in the past. He encouraged us to meet other families in the area that were in our same situation and gave us some phone numbers we could call.
We later found out that this treatment of the situation was far from the norm and a much better experience than many families have. Many doctors only have a cursory knowledge of CDCS and turn to all of the research that is out there in order to determine what they should talk to the family about. They end up telling families with a newborn baby that many kids have a failure to thrive and that the life expectancy may not be much more than a year. This is probably the worst misconception out there. That expectancy was based on research where a lot of other medical issues were untreated or misdiagnosed.
On thinking back on my initial thoughts and feeling, I am so grateful for the nurse and her careful way of letting us know her suspicions. I am glad that the geneticist encouraged us not to listen to the old research, and instead to focus on our son's future and on the accomplishments that he makes. I believe that has influenced every thing I do for Gideon. I hope that all medical professionals can act as these two did.
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