Thursday, February 20, 2014

Inside the American Medical System: Our Story Continues (Part 3 in the Series)

Read the beginning of our story here!

Continuing the saga...

A few days after our visiting our midwife, we found ourselves in our pediatrician's office for an official evaluation to find out what was going on. To my relief, our pediatrician immediately took us seriously, and after a few minutes of listening to my concerns, agreed that there was something serious going on. 

At this point, a few will be saying, "But why wasn't this discovered during his well-child visits?" The answer is simply that... it wasn't. Baby had lots of issues, but they were all mild enough - at the time - to fly under the radar, and nothing was ever found amiss during his check-ups during his first year, even though we were very orthodox with following the exact recommended schedule of visits. His problems became more and more evident with time, as he fell further and further behind his age-mates developmentally. Thus it was that I, and not our wonderful pediatrician, who first detected that something was wrong.

I should also say that this incident led me to have much greater faith in my abilities as a mother. In other words, when something is wrong, I will know. After doing lots of research and now having lots of experience with doctors and well-child visits, we know longer participate in this system - we have completely opted out of well-child check-ups. A mother who lives with her children around the clock will know when something is amiss and needs to be checked out. We are now in the process of switching to medical practitioners who do not require well-child check-ups. 

Continuing on...

When our pediatrician met with us, word quickly spread through the office that we had something special going on, so the crowd in our exam room quickly swelled. We ended up having myself, our baby, our 4yo, our pediatrician, several nurses, and an intern or two crowded into the tiny room. It was like a party! Everyone was talking at once, and it was actually a hugely positive experience. As I've mentioned before, acknowledging a problem and having people take one seriously about it is immensely to be preferred over having nebulous and semi-acknowledged fears hanging over one's head. It was an exquisite relief to be getting somewhere.

At the end of the visit, we didn't any concrete answers. Our pediatrician, however, acknowledged that something serious was going on. Baby was not developing physically as he ought, and there were lots of little physiological signs that had flown under the radar - clinodactyly (crooked pinky fingers, a soft indicator for lots of genetic disorders), single palmar crease, mild facial dysmorphology - lots of signs pointing to something like Downs Syndrome. But there was nothing to say definitely, "THIS is the problem." Instead, we were still left with a mystery.

However, our pediatrician immediately sent us in several different directions. They were:
  • Labs for general blood work and genetic testing
  • Developmental Pediatrics
  • Neurology
  • Genetics
  • Physical therapy for evaluation
And thus, the real adventures began.

As anyone who has been in the medical system knows, the complexity from there on out was so incredible that it's hard even to trace the web of what happened from day to day - and we didn't even have to deal with much of what others have to deal with, like surgeries and hospitalizations and multiple medications, equipment, and procedures. Ours was, as medical cases go, fairly simple. And yet it took hours and hours per week on the phone to deal with details, appointments, schedules, labs, connecting various doctors, and all of that.

I'll deal with the details of how I dealt with that in our next section on making a medical notebook, which was an absolutely life-saver. For now, let me try to summarize what happened from there.

One of the first shocks that we experienced was how differently the various caregivers responded to our baby's case. There were one or two who took a very casual attitude: "Listen, lady. Your kid's fine. Why are you bugging me?" And there were others who took a the-end-is-near-and-we're-all-gonna-die attitude - completely alarmist. It was all over the chart.

We hoped to get answers, but alas, there were none. And we never received any answers, despite repeat testing of all sorts (brain MRI, blood tests, cardiology tests, and the chromosome micro-array done twice). To this day, four years later, we still have no diagnosis for our baby's condition. We are simply one of many families whose child has an undiagnosed genetic disorder. It is hoped that at a later date further genetic testing may be able to give us answers, but that is a long shot.

In the meantime, we were sent everywhere on earth in terms of specialists. Occupational therapy, physical therapy, speech therapy, play therapy, cardiology, gastroenterology. You name it - we've been there. We learned a lot in each office, but again, there were no answers.

At the current time, we are no longer seeking a diagnosis - primarily because there is no purpose in doing so. Whatever our baby has is obviously so rare that there is no known data on that condition, so searching for an answer would be for our personal satisfaction only, not to the help of our baby. We have reached a peace of knowing simply that God has given us a very special baby, and we have stewardship over caring for him and loving him. That's all we need to know.

As our baby has grown, his problems have become more and more evident. The technical term is "global delays" - meaning that every area of his development (physical, gross motor, fine motor, speech, mental, etc.) is greatly delayed. At age four and a half, he is now just beginning to crawl. It is guessed that he will some day walk, and may have a few words, but will probably never have great speech skills or be able to read. Formal education will not happen - we will be focusing on life skills, if anything, and he will be with us for life. This is not a burden, but is a great gift and a wonderful stewardship from the Lord. We are grateful to the Lord for giving us such a sacred trust, and we are grateful for his precious life.

Who doesn't love a monkey?

In the next part in this series, I'll chronicle how I created a medical notebook to navigate through the complex web of doctors, etc., and then move on to the lessons we learned during this time.

Click on Part 4 to keep reading!

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