West Coast Florida Nesties
Kennedy Aleise 2/19/11
Life As We Know It
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Our tech team has launched updates to The Nest today. As a result of these updates, members of the Nest Community will need to change their password in order to continue participating in the community. In addition, The Nest community member's avatars will be replaced with generic default avatars. If you wish to revert to your original avatar, you will need to re-upload it via The Nest.
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Thank you.
Note: This only affects The Nest's community members and will not affect members on The Bump or The Knot.
Prenatal Testing Dilemma :(
I'm at a complete loss. I had planned on declining all prenatal screenings. I did not want a prenatal dx if by any chance, this baby has Ds. But at my appointment today my bubble was burst. In order to stay with my Midwives I have to have an OB consult and a level 2 u/s to check for soft markers for Ds, and heart defects. If there are any soft markers they're going to want an amnio. This all scares the crap out of me. There's a new blood test out that's over 99% accurate for Ds, and it's only available to high risk moms. Oh, and I have to go to Orlando for it. And hope that my insurance covers it, since it's $2000. Part of me wants to get the blood test and know for sure now, rather than being put through the stress of the ultrasound, etc. I really wasn't expecting this and now my anxiety is just in over drive.
Kennedy Aleise 2/19/11
Life As We Know It
Re: Prenatal Testing Dilemma :(
I'm really sorry you are going through this. We went for genetic counseling and are scheduled for a L2 ultrasound in a couple weeks but he told us that the amnio is 100% optional. He said if we would have the baby either way then there is no need to do it unless we want to be completely sure 1 way or the other. We also heard about the blood test but we were told that it isn't FDA approved yet, so it is not covered by insurance. He said they are expecting it will be another 5-10 years before it is FDA approved.
Would you be willing to do the US and refuse the amnio? The US should pose no risk to you or the baby, unlike the amnio that can cause miscarriage. I am surprised they would make you do this! I mean I understand it is a liability for them and they want to know what they are getting into but still....
The birth center is only doing it because of the laws. Because of Kennedy's history, I have to have an OB consent to an out of hospital birth, and she's going to want to make sure there's no chance of Ds before she does that. If it was up to my Midwife she wouldn't put me through any of this, and if I didn't want an out of hospital birth, it wouldn't be an issue at all.
I need to check with my insurance about the blood test. From what I read a lot of private insurance companies are covering it if there's a high risk situation, and having a child with Ds is high risk. But I'd have to find an OB associated with Florida Hospital in Orlando to do it.
I'm okay with doing the ultrasound but I absolutely do not want the amnio. Not that it would change the outcome of the pregnancy, but knowing one way or another will change the outcome of the birth. Maybe if there were soft markers on the level 2, then she'd let me do the blood test, rather than the amnio? I don't know. I was just completely blind sided by this. At my last appt the midwife asked about prenatal testing and we said we were declining it, and just doing an anatomy scan. She was okay with that, so this REALLY shocked me.
I know you prefer a birthing center, but, IMO, doing what's best for my baby would win over any birth plan wishes. Having a baby in a hospital through an OB isn't so bad. In the end, as long as you have a new addition to your family, does it really matter?
Feel free to be frustrated, surprised and vent. And feel free to think I'm being btchy - not that you wouldn't do what's best for the baby, I just am a "suck it up and do it b/c this is out of my hands" kind of person.
My issue is really that unless there is a life threatening medical issue, having a baby with Down syndrome at home isn't a bad thing, except by the law. My birth with Kennedy was amazing, and the only reason we had to go to the NICU was state law. And the midwives were amazing through the pregnancy, and have been so supportive after Kennedy was born. That said, we had a horrible horrible experience with the NICU which has scarred me from ever wanting to have a baby in a hospital if it can be avoided.
At this point I guess it's not a matter of IF we find out before birth, because it sounds like I'm going to have to, if I even want a chance at a home birth. But I'm going to have to decide how to find out.
I don't think they can legally make you have an amnio or do the blood test. Of course they can refuse to treat you if that you don't but I dont think they can make you have either of them! Would you rather have the amnio or deliver at a hospital? That may be the call you have to make.
Ugh, unfortunately there is no good answer! When will you talk to them again? If they do confirm DS, then will you have to deliver at a hospital no matter what? If that is the case, I think i would rather forego the rest of the testing and just decide to do the hospital delivery either way. Especially since you didnt want to do ANY testing in the first place!
I realize you really like this birthing center, but it seems like you're making it more complicated than it needs to be.
I don't mean to sound bitchy either. I would just give a hospital birth a chance in your situation.
ETA: There's been more information since I posted my first response. How about a different hospital if you didn't like that NICU?
Yeah, if they confirm Ds then I have to have a hospital birth. I left a message for my Midwife, and she's going to call me this afternoon. I think I'll go for the level 2 u/s and see what happens from there. If there are any concerns, then I'll figure out where to go from there.
First I have to mention if you are looking for a doctor in Orlando who is associated with Florida Hospital definitely check out Dr Warren from Contemporary Women's Care in Winter Park. They were the practice that I saw when I had my miscarriage in Orlando. Oh my goodness, I cannot say enough good things about this office. Never have I had my OB in Texas call me on the phone and Dr Warren did 3 times during the week I was in Orlando. Seriously, I can't recommend this practice enough. They TRUELY care about their patients and I was floored by their bedside manner. The two doctors associated with this practice are young and anything but old school.
http://www.myobgynorlando.com/
However, I am not sure if they do the testing that is required for you.
Another thing, what about doing the CVS test? I know there are risks involved with that test, but isn't it safer than an amino? I can't really remember because when I had my scare with T13/18 it wasn't an issue since I had already miscarried.
Like Nicole said, you have every right to feel the way you do right now. Also, I am sorry you had such a horrific experience with the NICU last time, but I wanted to mention my hospital birth with Macy was perfect. Maybe not as natural as your tub birth but it was still a day I hold close to my heart and would not change one thing about it. If you come to the point where it an amino vs a hospital birth, I would choose the hospital birth. The magic of that day is still there and hopefully if it comes to that you will have much better nurses/doctors this time around!
Baby Macy is here!
12/09 - Macy (daughter) | 4/10 - Began TTC Baby #2 | 12/10 - Chemical Pregnancy | 1/12 - Miscarriage at 14 weeks | DX - PCOS & Hyperthyroidism
Thanks Kathy! I left a message with the nurse to see if they offer the test. We're also going to try the Maternal Fetal Medicine group in Orlando. I'm still trying to find out if BCBS will definitely cover it.
I know a hospital birth isn't the end of the world. But after having the experience I did at the birth center, it's really hard to imagine doing it any other way, especially if I don't have to. I know having a natural birth in a hospital is much harder, and having an epidural isn't even an option for me. I had a horrible experience with the OB I was with when I got pregnant with Kennedy, and they are supposed to be one of the best in the area, so I feel really strongly about this. I don't judge anyone else for their decisions on birth, but for us, receiving care at the birth center is important to us, as long as it's healthy for everyone involved.
Oh good! Also, can you go to Winnie Palmer? They have such a great facility and everyone at the Maternal Fetal Medicine department was fantastic. I ended up going there to have my miscarriage vs Florida Hospital and everyone there was fantastic. It's a hospital built by women, for women and run by women and there is definitely a difference.
But I wanted to add, which it's something you already know, but chances are everything will be a-ok with this next baby. With all the research I did, I discovered that a good majority of the time chromosome issues are total flukes, which I did not know prior. For whatever reason I was under the assumption that DS was hereditary. While there is SOME genetic basis for chromosome issues, very seldom that is the case. So I have total faith that after your level 2 US this will all be a non-issue
Baby Macy is here!
12/09 - Macy (daughter) | 4/10 - Began TTC Baby #2 | 12/10 - Chemical Pregnancy | 1/12 - Miscarriage at 14 weeks | DX - PCOS & Hyperthyroidism
I don't think I can go to Winnie Palmer, because Florida Hospital is the only one that has the certification to do this test. Apparently most of the doctor's offices won't order the test, and just refer you to their Maternal Fetal Medicine doctor. She's willing to see me as a consult and order the test. But, the CPT code they bill with my insurance won't accept. They said they'll cover that test if it's billed under a different code, so now I'm on a mission to figure out what it is.
ETA: I know it's super uncommon, and I really wasn't worried about it. I don't know why I'm such a wreck now, other than the fact that I've heard from two people on my Ds message boards. One is pregnant with her second baby with Ds and the other just gave birth to her second baby with Ds. So I guess that has my anxiety a little high. Ds doesn't scare me, but the possible health issues do.