Saturday, December 13, 2008

My Story (part two)

New to My Story? You might want to start here.

We arranged to drop off BigBro at Grandpa Mel & Grandma Cathy's house. Hubby and I went to Northwest Perinatal (it's a clinic connected to Providence St. Vincent's - Portland, Oregon). I was sobbing in the waiting room, so they ushered us into a regular room to wait for the ultrasound. On our way back, I noticed that while our regular doctor's office had bulletin boards overflowing with baby pictures on the walls of the hallway - this doctor's office had a creepy absence of bulletin boards and baby pictures. I wondered - did any of these doctors deliver babies? We waited quite a while before being shown to the ultrasound room. The technician seemed to take forever taking pictures and measuring every part of our precious son. At least this technician talked to us and told us what she was seeing (at our regular doctor's the technician said nothing and wouldn't let us leave until we could get in to see a doctor - so that she could give us the news right away). After what must have been at least 45 minutes to an hour, the technician went to get the doctor. When he came in, he took over the ultrasound wand and started talking about everything we had discussed with the technician. In addition to what our regular doctor's office had found, they also thought that there might be a very small hole between the lower two chambers of his heart, called a ventricular septal defect (VSD); and that our son's eyes were slightly closer together than normal (hypotelorism). At this point, the doctor explains that each one of these soft markers are not really a major thing, if they were presenting by themselves. BUT, since there were all of these markers presenting together, there was an increased possibility that something was wrong chromosomally. He thought it could be Trisomy 18. Then, the doctor started puting on gloves while telling us that the only way to know for sure was to do an amniocentesis.

I piped up immediately (because of my earlier internet research) - I'm only 21 weeks, his lungs aren't developed enough AND there's a big risk that we could lose the baby from this procedure.

The doctor was obviously surprised that I brought up the risk and sat back and said - Well, yes, there is a risk with this procedure. We tell patients that there's a 1:300 chance - but this is based on old research - I really feel like the risk is more like 1:600 or 1:1,000. With an amnio, the bag of waters can rupture or infection can be introduced.

I asked why I should do the amnio now. Based on all of these markers it was likely that our child indeed had Trisomy 18 and we could just wait until it was safer for the baby.

The doctor told us that he thought there was a 5-30% chance that our son had Trisomy 18 and gee, let's just do the amnio to rule it out.

I pressed the doctor - how could he say only 5-30% chance?? Granted, I don't have a medical background, but based upon my cursory internet research, it looked like well over a 50% chance to me. The doctor then revised his estimate to 30-60% chance of Trisomy 18 and pressured us, yet again to do the amnio now. I asked why I needed to do the amnio now, when we already know (more likely than not) what we're dealing with and we can confirm when I'm further along and the baby's lungs are developed.

OKAY, here it is - are you ready for it? Then the doctor explains that while there is no law in Oregon, doctors here follow what is done in other states - that you can terminate a pregnancy up to 24 weeks. (Really - someone associated with a Catholic hospital is suggesting this to me?!?) To which, I immediately and emphatically responded - Well that's not an option, so why else would I need to do the amnio now? (It was at this point that he started to take his gloves off. Obviously, this lady had no intention of doing an amnio now) Over and over again, the doctor gave us 'well you would know for sure' and 'you would be able to prepare for his birth'. When I questioned if the doctor would treat us (follow-up visits) any differently if we knew for sure or not - NO, he wouldn't treat us any differently. Whether we knew the chromosomes for sure or not, he wanted us to come in every two weeks. I explained that I was well aware that even if we knew for sure - the prognosis wouldn't change (which, of course, he agreed with). He also asked if I had the AFP blood test done earlier in my pregnancy. He suggested that since I hadn't, that I should go ahead and do it. Plus we could also test to see if something called cytomegalovirus was causing some of these symptoms (bilateral ventriculomegaly). I agreed to the blood draw for the tests.

We were shown into a regular room. The nurse came in and drew my blood, then left. We waited and waited. When the doctor came in, we discussed each of the ultrasound findings in great detail. The only 'ify' things were: they weren't sure if the lung mass was BPS, bronchopulmonary sequestration, or CCAM, congenital cystic adenomatoid malformation); and whether there was a small VSD or not. The doctor wrote down each of the medical terms and had us make another appointment.

While we were making another appointment a really nice nurse told us that she'd had a brother with Trisomy 18. Although he only lived a short time, he was the light of their lives.


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