Married to the Empire

Friday, April 8, 2011

Decisions, Decisions

My OB-GYN sent me to a high-risk OB because of my age (I'm 37), migraines, and thyroid disease.  I saw this new doctor today and also met with a genetic counselor.  I found the genetic counseling horribly stressful, and I wished I'd known what I was in for because I would have asked Steven to take off work and come with me if I'd known.  Partly, I didn't know the answers to questions about his family.  His family is very complicated with lots of divorces and remarriages and half-siblings and people I've never met (like his bio-dad), yet I was supposed to know stuff about them. 

But that wasn't the stressful part. 

I was offered (pushed?) all sorts of genetic testing today, and I had to make a decision while there about what I would and would not let them do.  I knew I would allow the testing for things like Cystic Fibrosis and Fragile X.  Those simply establish genetic markers, which I think are important to know about regardless.  But it was the sequential screening I was unsure about.  For anyone who doesn't know, that test basically lets a woman know the odds of her baby being born with Down's Syndrome. 

Thing is, if I did the testing and the odds were bad, I wouldn't allow them to do an amnio on me.  There is a risk of miscarriage, and I don't care if it's merely slight.  (Also, I'm terrified of needles, so a needle going into my uterus unnecessarily?  No, thank you!)  So what's the point of knowing the odds and potentially having to worry for the next 6 months? 

Thankfully, they did an ultrasound first (everything looks good--baby has arms, legs, good cranial structure, obvious nasal bone), which gave me a decent amount of time to pray and decide what to do.  Ultimately, I opted out of sequential screening.  Thankfully, when I was able to talk to Steven after my appointment (because naturally, I forgot to put my cell phone in my purse and therefore couldn't discuss it with him during the appointment), he was in agreement with my choices. 

Sometimes, I think certain advancements in science and technology aren't really all that helpful.  More stress and worry with all the testing options today than women had in years past. 

The one very positive thing that came out of this appointment, though, is that the doctor and the genetic counselor assured me that the baby should be fine with my taking Imitrex for my migraines.  That alone was worth the stress I had to endure throughout my 2 hours there. 


Leah S said...

That's a tough position to be in. I personally opted out of all testing for my baby, mostly due to money... but also because whatever the results, I knew it wouldn't change anything.

There was a chance the baby could inherit my deafness, and what? Even if I could have found out while pregnant, there was nothing I could DO to change the outcome.

What I did do was go with a midwife instead of an OB. It's definitely one of the best things I've ever done in my life. Her nutritional guidelines have made a whole-family impact, my salad hating husband now actually craves salads. :)

She also introduced me to doTERRA essential oils. I now use the essential oils as my primary medicine cabinet. Peppermint worked wonderfully to curb the nausea. We don't have medical insurance for our son, but using the God given oils, we've been able to keep him relatively healthy at home.

I do realize your "high risk" position likely makes a home birth not an option... but perhaps you could seek a midwife for the emotional support for the pregnancy and birth? Mine was great at reassuring my issues and guiding me on what I needed to do.

I would gladly pay double of her $3,000 fee to have the lovely birth I had. 12 hours of labor from the first contraction to birth, a completely healthy boy, a small source of income (the oils), and a deeper appreciate of myself and family.

By the way, my mom used to suffer 3 migraines a week for 30 years (!!!), but now it's down to 2-3 a month, largely due to the oil blend called PastTense. She is completely off of her prescription medicine and even quit drinking coffee too.

You'll be ok. My pregnancy was the most stressful point of my life, but it ended up much sweeter than I ever hoped for. :)

Jen said...

I'm sorry you got ambushed with that. I go to the high risk doctor too, with my history. I turn down everything too. I accept the ultrasounds. The first practice I worked with told me to go home and come back with a different answer when I turned the sequential screen down. I changed practices - they had too much of an agenda. I figure it they want to push it then, they'd push abortion too, and there's no need to allow that discussion. Not an option for us.

I too think some of these advances aren't too helpful. Today I had my middle of the pregnancy ultrasound, and found, just like with my perfectly healthy son, that baby has a tiny cyst in the brain. It's probably nothing, but with other visible problems might suggest trisomy 18 or downs. So they offer amnio, even though the risk is greater than the chances of a problem. Without other visible problems (baby has none, just like Ian) it basically means nothing. Just one more thing to have a worried looking doctor come in to talk to you about.

Anyway, we found out baby is a girl today, and are having a good time.

Try not to worry. There are a lot of choices thrown at you as a "high risk" mom, but generally, everything is just fine. You'll be feeling better soon too.

ashley @ twentysixcats said...

I opted out of all the genetic testing. I could see the benefits of being prepared for something like Down Syndrome (and getting a pediatrician lined up for that), but only if the test was more accurate. The odds of getting a false positive is too high for me! I'm glad that they assured you that you were okay to be taking Imitrex! I'm sure that's a weight off your shoulders. How far along are you now? Were you far enough to get a look at the gender?

~Kimber said...

Another Mom here who opted out of the testing. The baby was coming either way!
I did something similar to the previous poster...we cannot legally have midwives/home births here in AL, so we hired a Doula to come to the hospital with us. She knew what kind of birth we hoped to have, and because she is an OB RN, was able to be a mediator between the kind of birth we hoped to have and what the staff was comfortable with. The whole thing was a fantastic experience and I, too, would have paid double for having her there!!

In related news, I am reading a book called "The Migraine Brain", which has been incredibly informative and helpful in helping to discover some of my migraine triggers. I've unearthed a few that I didn't realize I had. Very detailed info, yet written in a way that I can understand. Highly recommend it!!

Leia said...

I've always been middle of the road when it came the genetic testing. As long as it's just taking blood from me with no risk to the baby, I'm ok with it (so yes to the quad screen, no to CVS or amnio). With our second, her 20-wk ultrasound showed a choroid cyst (in her brain) which is a marker for trisomy-18. Fortunately, we happened to be at a catholic hospital, so while they presented the idea of amnio as the only diagnostic tool in their arsenal, they also didn't push it, nor would they have suggested anything (I assume) had the follow-up shown that our daughter had it.

Hubs especially is someone who needs time to get used to ideas, so to have advanced warning that our child might have Downs or something else would be essential for his stress level. It would give us time to research potential problems and find specialists and support in our area.

For the Trisomy-18 scare, it gave us the opportunity to come up with names and decide to find out the sex at the follow-up ultrasound if it appeared likely, giving us as much time as possible to bond with our child (as someone other than just "baby") prior to his/her passing.

That was something that didn't show up in the quad screen and did in the ultrasound though. And yes, it was information that scared the crap out of us for the 8 weeks until the follow-up and turned out to be nothing...but it was an opportunity to grow in our faith and trust that Joanna Hope (meaning "God is gracious, so we can have hope") was in the right hands.

Anonymous said...

I avoided the Down screening b/c of the pressure to abort if there is a 'positive' result, and the test is not that reliable. Unfortunately here I met one lady who was pressured to abort because her (beautiful!) girl had a cleft palate and "nobody would love an ugly baby" (this from her doctor!). It's just not worth the fighting.