Tuesday, January 13, 2009

My Story (part five)

New to my story? You might want to start here.

As I look back on those first 2-3 weeks after our quasi-diagnosis (it's not really a diagnosis until the amnio results come in), I remember: how frightened I was, the discussions no husband and wife ever dream that they'll have, the not knowing, the waiting, reading and absorbing other's stories and all the medical things I had to learn. At Katie's suggestion, I joined a trisomy medical list-serv to better understand some of the many medical challenges. I was so worried about the future (which I never had any control over), I wish I had focused more on the joy of being in the moment: I was still pregnant and my child was still very much alive. I sometimes long to have the emotional roller coaster back - just for one more day with him. Instead I had spent so much time worrying. Did he have a VSD, or not? What was his lung mass & how would it grow/change over time? Would he need oxygen? Would he start measuring small for gestational age (IUGR)? Would the choroid plexus cysts start shrinking or growing? Did he have rocker bottom feet? Would we make it to term? Would he develop fetal hydrops (and, in turn, would I develop MIRROR syndrome)? Would I develop polyhydramnios? Would I go into preterm labor (if I did, would the doctor prescribe magnesium sulfate, or insist that we 'let nature take it's course')? Would the placenta abrupt? Would I develop pre-eclampsia or gestational diabetes? Would he need a feeding tube? Would he have the apnea problems? Would he have digestive problems? Was his esophagus connected to his stomach? Did he have some other problem that we didn't know about? Would we bury him, or have him cremated (which involved a whole other set of who? what? and where?)? Would we hire a nurse to come help us at home? Should we set up a whole nursery? How do we tell BigBro?

It was also within those first few weeks that we decided that we just couldn't argue over a name this time... We needed to agree on a name - and - the sooner, the better! Miraculously, after just a few days, we agreed on Owen.

Before our appointment with Dr. Winkler, Ward and I had discussed amnios. I was pretty much opposed to getting one before 28 weeks, yet wondered why all the pressure to have it right away? After all, I am open minded (stop snickering Hubby), was I missing something? What benefit(s) outweighed the risks? I felt like we had already 'hit' the odds lottery with Trisomy 18 and, gee, did I want to 'hit' the odds lottery on the amnio risk too? It's funny how doctors will get information from other doctors that they don't ever tell their patients. Even though I hadn't been through all the years of schooling and residency, nor did I have overwhelming debt from college - that doesn't mean that I'm dumb. Just ignorant. Meaning that I do possess the capacity to learn something new. Fortunately, Ward treated me like an old dog that could learn new tricks! So, one of Ward's doctor friends shared that while many studies point to a 1:200 - 1:300 chance of losing the baby from an amnio. These studies were of pregnancies around 20 weeks gestation. There have been other studies that show that there's a 1:100-1:150 chance after 26-28 weeks. Aha! But, I still remained unconvinced to play the odds lottery. I have to say: Why do the amnio at all? Especially if the patient is not in denial & is already preparing for the 'worst case scenario'? (you'll read more about this later)

I ordered copies of all of my test results and ultrasound reports (funny how labs and doctors don't ever give you, the patient, all of the information - in writing - unless you specifically request it), then brought them to Dr. Winkler's office. After filling out all of the obligatory new patient forms, signing the appropriate disclosures, submitting all of my prior reports, peeing into a cup and ugh - getting weighed - Hubby and I were ushered back to the ultrasound room. The ultrasound technician didn't take nearly as long to look Owen over, then we were moved into another room. Here, we met Trish and Dr. Winkler. Dr. Winkler went over the previous ultrasound report and this day's findings. He never once mentioned termination and agreed that we could wait to do the amnio. He openly and honestly answered all of our questions. I was so happy this doctor wasn't like the other doctor! One thing the ultrasound report from NW Perinatal listed (and the doctor never mentioned) was that the stomach was 'not visualized'. Thank goodness, this time, the ultrasound technician had no difficulty in finding it. Also, this time, they weren't really sure if there was a VSD or not. Hmmm. I guess we'll have to answer that one later! The other surprise was that the doctor from NW Perinatal had mentioned that whether we knew the chromosomes or not, I was to see them every two weeks irregardless. Dr. Winkler allowed us to keep to the once a month prenatal checkup schedule until we were further along. I think it wasn't until 28 weeks that we switched to every other week checkups. Nothing was really new - they were seeing the same 'issues' on the ultrasound. So, one other question I asked Dr. Winkler (I never mentioned the conversation I had with the doctor at NW Perinatal) was, with all of these soft markers, what did he think was the possibility (%) that our son had Trisomy 18.

Brace yourself.

Dr. Winkler said that he thought the possibility was ninety percent. He said that there was about a 10% chance that our baby has normal chromosomes, but that even with normal chromosomes, the baby still wouldn't be normal and probably still had some other type of syndrome. Wow, my suspicion about the doctor from NW Perinatal had been right! I had this deep, gut feeling that he was purposely under estimating when he said 5-30%, then upon my pressing revised it to 30-60%!


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