Sunday, December 28, 2008

Post-adoption Medical Examinations - The Bad, the Worse, and the "We can live with that"

When you adopt in Russia, you are supposed to be given the child's medical records, their "diagnosis" and you actually sign paperwork in Russia on your first trip that says you have been given these things, that you understand them completely, and that you agree to pursue the adoption anyway. On your second trip, the judge asks you about the medical records and diagnosis and asks if you understand them and if you are prepared to deal with the medical conditions. You had better say "Yes" if you want to be given custody. Our local adoption clinic does "pre-adoption visits" where they will go through these records with you and explain them from the view of Western Medicine (which is VERY different from the view of Russian medicine).

We had one problem... we NEVER received ANY of the medical records of our kids until AFTER the second and final day of court. On our first trip, the orphanage director called the doctor into her office and she explained (or at least our translator told us) that the kids were healthy, that they had physicals on such and such a date, and that they had cognitive and social delays that are typical of orphanage kids. We received this verbal explanation and the chance to ask questions, but we received NO ACTUAL PAPERWORK about their medical history (even though russian law requires it.).

On the second trip to Russia, we again met with the director and the doctor before court. Again we heard about recent physicals, about cognitive and social delays (but the director told us how smart Kim was and that she was no longer delayed and had "perfect memory"). This time we were given more specific diagnoses... "cerebral asthenic syndrome" for Kim. They also explained that Peter has a "problem" with his mitral valve in his heart, but that it is common for children and not an issue. This was the first time we had heard of this one. Had I known of this, I would have brought my stethescope and listened to the murmur myself. They told us nothing else.

AFTER the adoption was final and we had the kids, we received their paperwork to take to the doctor in Moscow who would do the physicals for their immigration visas. I read through the translations and learned a few "interesting" things that were NEVER discussed with us. They had orthopedic concerns about Peter's knees. He is VERY knock-kneed (genu valgum for my students who are reading this)... I wonder if he might have had rickets given his tooth issues and the knee deformity. The kids tell us that they never had milk in the orphanage. We also learned that both Kim and Peter's previous TWO Mantoux tests were 15 and 12 mm respectively. I recognized this one immediately. The Mantoux test (aka PPD or tuberculin test) is the skin test for Tuberculosis and readings of the size that the kids had means that the tests were positive. This was NEVER mentioned to us at any time before the adoption. Oh crap. Now what? Were they even going to be able to enter the United States? They had chest X-rays at the Moscow medical exam and were cleared to enter the U.S. I have these X-rays and they both look pretty much fine. Unlike X-rays in the U.S., the patients' names are written on the printed X-ray with a Sharpie instead of included in a label in the X-ray itself. If you wanted to, you could take an old X-ray image, print it, and write someone else's name on it. We were not able to accompany the kids for the X-ray and I'm not entirely positive that the X-rays I have are actually of my kids. I'll just say that they are certainly not as clear as the X-ray we had at the adoption clinic in the U.S. We absolutely feel that we have been done a major injustice by not giving us medicals or disclosing their contents. I don't know that our decision to adopt would have changed, but we would have been in a position to do some research and to be prepared... just as the court required us to be.

In the U.S. our local children's hospital runs an international adoption clinic. We had our appointment pre-scheduled for less than a week after we returned. It is a two step process. Day 1 (Friday) the kids have a physical exam, a developmental exam, and we spoke to a nutritionist. The kids had blood drawn for a battery of tests (vaccination immunity, common genetic diseases), given stool sample jars, and the kids were given (another) skin TB test. The nurse did not do a very good job of explaining WHY the kids needed this when we already had positive tests on them in Russia. All she could explain was that we can't trust the Russian tests. This was hard for us, but not too hard (emotionally) for the kids. They are used to suffering through this test and it was almost as if it was no big deal to them. (and what is one more set of scares?)

Over the weekend, the kids had VERY POSITIVE result to this test. At one point, Kim's little arm had swelling from the test that was wider than her arm had been before. Both kids' swollen red, itchy patches from the test blistered... not just swollen, red and hard... they actually blistered... a lot. They both said it did not hurt (they are very Russian), but it did itch. This was nothing new to them, but it was REALLY hard on us, particularly on Lisa who felt like she allowed someone to hurt her kids for no good reason.

On Monday, we had the second part of the clinic process... this time at the hospital in downtown Columbus. The kids' arms were looked at to read the TB test (both were clearly positive for TB... Although that long after the test they didn't look bad at all, compared to the previous two days.) We had brief hearing tests, and we spoke to a developmental psychologist about the kids transition so far. Because both kids had positive skin tests for TB, they both had to have chest X-rays.

The physician did a much better job of explaining why the kids had to have the skin test despite their history of a previous positive. We weren't crazy about the explanation, but at least we understood a little better. In Russia, they often give kids an immunization (BCG) for tuberculosis to try to prevent it (TB is rampant in Russia). This immunization DOES NOT actually prevent TB infection, but it seems to limit the spread of the disease in your body once you have been infected. Once you have this immunization, your TB test will always produce a positive swollen spot. They had to re-do the test to 1) know what strength of TB test is done to make sure it was correct and 2) read the size of the spot to know if it is really TB or just the reaction to the previous immunization. Both kids were positive for TB. The X-rays showed Kim to have no active infection. Peter's X-ray showed a couple spots that were not clear enough to rule out active infection... so he had to have a chest CT (CAT Scan)... and he had to wear a mask in the hospital until he was cleared. The mask absolutely terrified him and we had his biggest meltdown ever.

The CT was scheduled for later in the afternoon, so we were able to take the kids out of the hospital and bring them back. We had lunch and then Kim stayed home with Beth and Luke while Lisa and I took Peter back for the CT. Peter decided that he could wear his mask if Dad wore one too. So, with us both donning our masks, we went to radiology, where we had to stay in the special isolation waiting room (they have to buzz you into the room). We had the CT and were able to have a head CT also (it was to look for anything that might explain Peter's small size and was already scheduled for another week away anway... killed two birds with one stone). Peter's CT was fine... no active TB. Because both kids have had previous exposure / infection, both Kim and Peter will have to take a daily antibiotic for the next 9 months... no fun. They are not contagious and are not at any risk, but the treatment will reduce their risk for a future recurrance of TB (happens in up to 10% of folks who have been previously infected).

As I am writing this, the phone just rang.... it was the health department... you remember the "Ya Hachoo Kaka" post?... the samples were positive for Giardia. Looks like maybe another antiobiotic for a few days. They wanted to follow up to find out where our kids came up with this... the fact that it was an adoption solved their concerns. I wonder what the blood tests will have to say when they come back...

3 comments:

Anonymous said...

well, I guess they can only get healthy once you know what is wrong. Although the Russian authorities and medical personnel don't get any stars for helping....
Hang in there!
Amy

Anonymous said...

It is actually the agency that should have gotten us this information but that would have ment that they where actually working for us. I'll leave it at that.

Lisa

Anonymous said...

So you two could actually write a manual for those who are considering international adoption, especially from Russia.