My Story (part two)

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

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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.

Continued...

My Story (part one)

My mom... oh wait, maybe I shouldn't start the story at the very beginning. How about if we just start around the time of BigBro and Owen...

I enjoyed being pregnant and had a rather uneventful pregnancy with my first son, BigBro. I was working full-time at Nike and everything was 'normal':

• I did everything my doctors told me to do (ate nutritious organic foods, stopped drinking coffee, took prenatal vitamins, had all the prenatal visits, tests/ultrasounds, etc)
• Had morning sickness the first three months (it really annoys me that people call it morning sickness, because it's really an all day thing, not just in the mornings)
• Gained weight (too much really, but I really loved Burgerville's Chocolate Hazelnut milkshakes at the end of my pregnancy)
• Developed heartburn (which seemed to get increasingly worse as my tummy got bigger)
• Disagreed with my husband over the name
• Had a baby shower
• Argued with my husband over the name
  
• Bought everything else we needed for a baby
• Did I say we fought over his name?
  
• Decorated his room (of course we painted his walls orange!)
  
• Developed Sciatica (at the end, I couldn't sit for long periods - my leg would fall asleep)
• At the end, I was whale-like with very swollen feet and ankles
• I was almost two weeks overdue w/nothing going on (no dialation, no thinning) when I went in to be induced (Easter weekend 2005 at Providence St. Vincent's - Portland, Oregon)
  
• As far as pain goes, I thought I'd hold out as long as possible before asking for anything for pain... I ended up wanting the epidural by the time I was 3 cm dialated (does that make me a wimp?)
• I pushed for only 45 minutes, then my big (almost 9 lb) boy was here!

Almost 4 years later, I can still remember vividly how excited (and happy) we were to have a new baby. Let me say that I grew up with the brain-washing our society imposes on little girls. You know, the load of crap about how you're supposed to work, get married, have babies (that you put in daycare), climb the corporate ladder and EVERYONE'S happy. I returned to work for a few months and realized what a load of crap that is! (Partially, thanks to Dr. Laura) I finally came to the realization: Who did we want to raise our child & give him his moral compass? An $8-10/hour daycare worker or his parents? I'm a stay-at-home momma, so you can guess the answer to that question. BigBro is the light of our lives. I never realized how much you could love someone until I had a child. Don't get me wrong, I love my husband - and loving a child is totally different.

In between BigBro and Owen, we had a couple close family members get very sick and pass away. Needless to say, I have become somewhat skeptical of doctors. They call it practicing medicine for a reason! You need to research and get informed about your own health / health problems and be your own advocate with the doctors about what treatment(s) to try, what side-effects there are and what the likelihood of a positive outcome might be. I could go on and on about my political beliefs on health care costs / insurance, but I won't do it in My Story, please someone ask me about this later & I'll post my political beliefs.

We tried to get pregnant again for over a year, then in early February 2008 I became pregnant with Owen. I refused the AFP (or quad screen) and early ultrasound (nuchal translucency screening) because I believe this to be a waste of my health insurance company's money. No matter what the outcome, I wouldn't abort the baby anyway - so why do these tests? Also, I had a friend have a false positive, which literally stole the joy of being pregnant for the remainder of her pregnancy. In her case, nothing was wrong or went wrong - it was a needless stress/worry.

Early on, I sensed that something wasn't quite right, but had no idea what it could be. It seemed like this child moved less frequently, less vigorously and I didn't feel his movements until I was a few weeks further along than with BigBro. I told myself that every pregnancy is different, so there was nothing to worry about. I was seeing an OBGYN at a clinic connected to the Legacy at Meridian Park (in Tualatin, Oregon - which is the nearest hospital). Then on June 18, 2008 (a day I will never forget), we had our ultrasound at 21 weeks (we did this just to find out if we were having a boy or girl & for no other reason). That's where we found out that we were having another boy (yeah!). They explained that they had found some soft markers on the ultrasound for something called Trisomy 13 or Trisomy 18. The doctor told us she was very sorry (she said it like our child was going to die or something??!!) and that we would need to see a perinatologist for the remainder of my pregnancy. I felt castaway. The doctor called a clinic connected with Providence St. Vincent's and made an appointment that same afternoon for us. I had never heard of Trisomy 13 or Trisomy 18 and when we got home, I immediately got online to see what this was all about. We had about 2 to 2-1/2 hours to kill before leaving for our appointment at Northwest Perinatal. The ultrasound findings were: clenched fists, bilateral ventriculomegaly (slightly enlarged brain ventricles), choroid plexus cysts (fluid filled cysts in the brain), a lemon shaped head and a lung mass. All the websites that I looked at showed us how very devastating either of these diagnoses would be, yet offered hope that our child could live up to a few years. The statistics were startling! Trisomy 13 occurs 1:5,000 births. Trisomy 18 occurs 1:3,000 births. Only 50% of the time these babies make it to term and of those that make it to term - only 5-10% lived beyond one year old. I had seen that a firm diagnosis could only be made if we did an amniocentesis. So- I looked online at amnios; what exactly the procedure entailed and what the risks were (some sites quoted 1:200 and others 1:300 chance of losing the baby). I felt like the odds were stacked against us and wondered why we would have an amnio before 28 weeks, which is when his lungs are developed enough to possibly survive a rupture of the amniotic sac.

Continued...