Tuesday, January 24, 2012

Prenatal Testing- Take 2

Wow.  What a difference a day makes.  My head is spinning from everything that's happened in the past 24 hours.  Some of you may remember I wrote a post on our decision to decline prenatal screenings with this pregnancy.  We were firm with our decision and I was amazingly calm about the potential for another birth diagnosis.

Yesterday at my appointment with the midwife I was shocked to learn we would have to consult with an OB because Kennedy's history brought me into a risk category.  I discussed it at length with my wonderful midwife and felt comfortable with the fact that I would have to have a level II ultrasound to look for soft markers for Down syndrome or a heart defect.  Unfortunately this also meant that if there were concerns, I would potentially have to follow through with an amnio.  The more I thought about this, and talked to my husband about it, the more nervous I got.  Not about having another baby with Down syndrome.  But about having another baby with medical complications, which is clearly a higher risk when a child has Down syndrome.  Then there was the potential that the level II ultrasound would be fine, and we could still have a shocking birth diagnosis.  I absolutely do not want to risk out of care with the midwives, but at this point it seems inevitable that we could end up with a prenatal diagnosis, and now my anxiety level is at 300.  After much research, consideration and discussion, we have a new game plan.

I'm waiting for a call to schedule an appointment with the Maternal Fetal Medicine physician about 1.5 hours from us.  We'll be consulting with her, in order to obtain the MaterniT21 test.  This will tell us with about 99% accuracy if the baby has Down syndrome or not.  Best case scenario - we find out that the baby does not have Down syndrome, and we are able to continue care as planned, as long as there are no cardiac concerns that would prohibit it.  Worst case, if we find out that the baby does have Down syndrome, we will be risked out of the birth center.  Down syndrome doesn't scare me.  But the health issues that can come with it, do.  And so does the idea of risking out of my midwives care.  After they played such a huge role in Kennedy's birth, and the postpartum period, I cannot imagine them not being a part of this pregnancy.  I do have a game plan in my mind, if that's what it comes down to.  We had a wonderful experience at the hospital where Kennedy's heart surgery was performed, and in order to avoid the stress and tears that our NICU experience provided us, I would not hesitate to drive that far, if it meant having a better experience.  But in the end, hopefully it doesn't come down to that.

So for now, we wait.  Oddly enough, I was okay with waiting until birth to know whether or not this baby had Ds, but now that the wait is only weeks away, my anxiety level is through the roof over it.  Maybe as the birth got closer I would have felt this way anyway?  Who knows.  Hopefully, they will be able to schedule the appointment in a reasonable time frame, and 8 days after having the test completed, we'll know what to expect, one way or another.

10 comments:

  1. no matter what the ultrasound says, you dont HAVE to do the amnio! Dont let them make you think this. Amnios are only necessary for aborting the baby, anything that is "wrong" with the baby that they can help or fix prenataly can be seen by ultrasound, the amnio is purely a decision making tool. With that said, I choose to do an amnio for pure knowledge- I wanted to know if and what syndrome my baby had, not to abort, just to know. But there is no reason for you so do the amnio if you are fine waiting till birth to know and if you plan on keeping baby no matter what. MFM will push an amnio like crazy, they will tell you its necessary, but its not!

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  2. o and if you do have to delivery via hospital route, I delivered Fiona at AC St Pete and would be happy to talk to you about that experience. I loved loved loved my OB who was part of the MFM practice there.

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    1. Thanks Shannon! I know I don't have to do the amnio, but if there were concerns on the level II and I still wanted to do a home birth, it would be one consideration. But, I think the MaterniT21 test should give us the information we need, and eliminate the need for the amnio. I'll definitely be in touch if we end up having to use All Children's!

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  3. Jennifer,
    I am praying for the best case scenario and for peace for you as you wait for the test and then the results.

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  4. You probably would have felt anxious eventually. Hopefully, the tests will be scheduled quickly, you get your results and you can enjoy the remainder of your pregnancy!

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  5. Praying for you Jenn-all is well! I am your doula where ever you birth and I will be there for you all.Big Hugs!

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  6. I feel your anxiety. I hope everything goes well for you during the tests. I pray you'll be able to continue with your Midwife care since it's what makes you comfortable. I love your blog, and Kennedy is such a beautiful little girl. She seems to love the camera lol. Your blog is very informative, I've learned a lot. Thanks for the link (from JM). I look forward to reading more. GL in everything. HUGS

    Tina (TKbunny from JM)

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  7. Lots of prayers to you right now, friend:)

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  8. My 1st child was septic at birth, my second had Down syndrome and other congenital anomalies prenatal diagnosis. Prenatal testing doesn't hold all the answers. That said I trusted my third birth to a freestanding birth center within a 5 minute drive to the hospital. I didn't have any definitive testing with her because it wouldn't have relieved any anxiety. I think it's kind of weird that they are making you have testing. Don't feel pressured to do anything you're not comfortable with, but definitely get it if you want it. Best wishes on a beautiful pregnancy and baby!

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