One Diver’s Perspective.

Scuba, Photography and Scandal

SCIDS (Severe Combined Immune Deficiency Syndrome – bubble boy syndrome)

We are new parents as of a few weeks ago. A few weeks before that, New York State began screening newborns for a very rare and very serious condition known as SCIDS, a condition which if left untreated leads to the death of most people within the first year of life, but if treated in the first few months, can be cured and lead to survival rate of 95% though bone marrow or cord blood treatment.

We knew nothing about this before Tuesday afternoon. On Monday afternoon, we visited the pediatrician and were told he wanted to see if our baby could gain more weight by Wednesday, so we went home with a mission. Wake, change, feed, wake and supplement. Growing a baby is tiring. So on Tuesday, we napped for 90 minutes, and woke up to find a message on the machine… “Hello, this is Lauren from your pediatrician’s office, the doctor has been trying to reach you for over two hours, please call.”

Now this was odd, since we saw the doctor the previous day and were going see the doctor the following morning. When I returned the call at 4:13, the office told me again that they were trying to reach for over two hours, and I asked what the problem was. They told me that one of our son’s tests came back positive, and because they could not reach us they made an appointment for us to see a specialist the following day at 2pm. She gave me the new doctor’s contact information and address, so I called her and wound up in voicemail. I looked her up to see she specialized in allergies and immunology.

I also looked at the phone log and saw that the pediatrician’s office had called at 3:12, 3:17, 3:21, 3:26, 3:42, 3:51, 3:58, and the message was left at 4:05. WOW! I do not believe I ever tried to reach anybody so desperately. What was so important?

I called my pediatrician’s office back and told them it has been 30 minutes but I did not get a return call from the specialist, so I wanted go confirm we had the appointment even if I did not hear back. She said yes, and I asked what this was all about. She told me that our boy’s test results came back positive for Severe Combined Immune Deficiency, or SCIDS. She also told us that our pediatrician was not in today but that he would be told first thing in the morning before we were to see him for our 9:30 appointment with him.

After hanging up, I hit Google and learned enough to know we were in a lot of trouble. I read that SCIDS was considered a pediatric emergency and this was consistent with being called 8 times and having an appointment scheduled for us all in the course of an hour.

It turns out that our baby does not have SCIDS. New York recently (less then two months ago) started screening for SCIDS, and this simply means that babies would be tested for certain traits and if they tested positively they would need follow up testing. In other words, there are going to be a lot of false positive test results. Our baby does have a very low T-cell count and therefore has a very compromised immune system that requires monitoring but which may also fix itself over the coming weeks. However, he has more T-cells than a SCIDS baby would have, so we are not facing the worst immune deficiency disorder and he may very well out grow this over time.

Needless to say, we are quite relieved and quite annoyed. Our pediatrician’s office really messed up badly. The news should not have been conveyed by a non doctor and the doctor should have known about the test results when we arrived the following day. He did not. And he let us go to the hospital to have the sonogram done where we sat in a waiting room for over an hour. I should have known better and canceled the sonogram so we were not around potentially contagious people. He should have taken this more seriously then he did. And his staff should not have panicked us by telling us he had a condition he did not. When we went to the immunologist, before we had our insurance card copied, a nurse swept in and took us to a private room so we would not be around sick people. My pediatrician took no such precaution either because he was thoughtless or because he was never told about the screening result. Either way, not cool.

We will know more when he is retested and when other test results come back over the next couple of weeks. In the interim, we will be looking for a new pediatrician. Hopefully, other new parents will be spared this anxiety. And hopefully other pediatricians will not make the same mistake and implement more appropriate communication procedures.

This is one diver’s perspective.


December 3, 2010 - Posted by | Life | ,

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