Wednesday, March 30, 2016

Osteogenesis Imperfecta

When Russell came in to foster care (February 2015), he was healing from fifteen fractures: 2 in the skull, 3 in the ribs, and both arms and both legs in multiple places. All of the fractures were at different stages of healing. The most recent one was his left arm. That one required casting for a couple weeks. (He also had a lacerated liver and at 18 months of age weighed less than 10 pounds.)

At some point in time during the initial investigation, someone mentioned something to someone about needing to get the testing done for Osteogenesis Imperfecta (brittle bone disease). No one did this though. Russell was released from the hospital and sent to a shelter in Central Texas. And no one told me to order the test done when he joined our family.

Then Russell broke his leg while under my watch. (January 2016)

Bopper scrambled to get information. She wasn't the case worker when Russell came in to Care. She didn't know if the OI test had been done or not. After digging through records, it was determined that the OI test had not been done. I was told to get one scheduled.

I had our family doctor get a referral to a geneticist the day after we were released from the hospital. The soonest available appointment was for today (March 30, 2016). I loaded up the babies this morning and set off for the geneticist. Thankfully Russell was the first patient on the list to see the doctor. Our wait was minimal (the doctor came in about 30 minutes past our appointment time).

The doctor walked in to the exam room and basically started off the show by saying the OI test is very expensive (around $2500) and the only lab in Texas that does it does not take Medicaid. He then spent a lot of time explaining how the insurance system works and how the Baylor College of Medicine would do the test but they would require a credit card up front. Basically, if CPS wants the test done, they can foot the bill for it.

The doctor performed a visual exam of Russell. He measured things. He examined all his limbs looking for deformities. He looked at his teeth and eyes. When finished, the doctor indicated that Russell doesn't have any of the markers for even mild Osteogenesis Imperfecta. Now, I don't think this will hold up well in a court of law. But I'm not sure the results of this test matter in court anyway. No one is trying to press charges for the broken bones. No one was charged criminally at all. They claim they don't have enough evidence. And as the case stands right now, Mom is in no position at all to be reunified with her children. So this test would be a formality. The results of it won't change the outcome of the case at all.

Still, none of this is up to me. All I can do is inform the decision makers of what happened today and let them sort it out. I called Bopper as soon as I got in the car. She didn't pick up so I left her a message to call me. Then I called Ms. Lawson, Russell's lawyer. Ms. Lawson didn't pick up either. So I made one more call to her office. I was able to speak with a receptionist. I left a message with the receptionist explaining the situation as briefly as possible.

Ms. Lawson sent me a text letting me know she was in court.

She must have felt the situation was important though. Not too long after I hung up with her receptionist, I got a call back. Ms. Lawson had some more questions.

So back and forth we went for a bit. Her receptionist would ask me a question. She'd relay my answer to Ms. Lawson. Ms. Lawson would ask another question, the receptionist would call me. It was a bit cumbersome. But Ms. Lawson determined that she would be requesting a special hearing to let the judge know about the inability to do the OI testing right now.

Then Bopper returned my call.

Before we could deal with the drama of the OI test - we first had to deal with the drama of the grandparent visit that didn't happen today. I had spoken with Bopper last week to tell her that the appointment at the geneticist at 9:00am was going to make a 10:00am visit impossible today. Bopper agreed with me that the doctor appointment could count as a "visit" and that she would let the grandparents know.

Unfortunately, Bopper forgot to tell the grandparents anything last week.

So while I was out today, Herman got to deal with the visit supervisor that showed up and then the grandparents that arrived a few minutes later. Thankfully I had warned Herman this might happen so he was prepared.

Bopper handled all that. Then she called me back so we could discuss the OI test that didn't happen.

There wasn't much for Bopper to say or do. She thanked me for letting Ms. Lawson know already and she told me that she would tell her supervisor immediately. (She also mentioned that the staffing that was supposed to happen yesterday didn't but she was scheduled to sit down with her supervisor this afternoon to staff the case.)

That's all I know. The geneticist didn't schedule another appointment. No tests were run today. Decision makers have to decide how to proceed. Lord willing they will do so intelligently. Personally, I don't think this expensive test needs to be run. The System is strapped for cash, this results of this test aren't going to change the placement outcome, so it doesn't seem necessary. At least not to me. But I'm not a decision maker in this case.

Once home, I sent an email to Ms. Lawson giving her some of the information I had relayed via the receptionist in writing. I wanted to make sure the information had been relayed accurately. I also reiterated that the geneticist doesn't think Russell has any of the markers of OI. I copied a list I found on the internet to show her what the signs are:

  • bone deformities
  • multiple broken bones
  • loose joints
  • weak teeth
  • blue sclera, or a bluish color in the white of the eye
  • bowed legs and arms
  • kyphosis, or an abnormal outward curve of the upper spine
  • scoliosis, or an abnormal lateral curve of the spine
  • early hearing loss
  • respiratory problems
  • heart defects
I mentioned again that Russell is normal for a child with Down syndrome.

Russell's visit with his grandparents is likely to be rescheduled for Monday morning next week. I guess I'll hear what the decision makers decide to do later. I'll keep on doing what foster parents do best...wait to hear what to do next.

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