14 Week Down Syndrome Blood Test

I recently found out I was pregnant, and boy was that a shock.  I did the usual blood test at the 14 week mark, and it came back bad.  I called my doctor back to get the results and she started in on a litany of reasons why I needed to see a geneticist immediately (one being that I am currently over 30??).  According to her, I had a 1 in 30 chance of having a child with down syndrome due to my results.  She made this seem like a dire situation and that my new baby will definitely have down syndrome.  She asked if I would like to terminate, and I said yes (I just spit it out, not even thinking).

I know having a child with down syndrome would severely test my family, and as a just in case - since we hadn't of even known down syndrome was "on the table" before now...I wanted to make sure I was getting all the information needed, before deciding.  So, being put on the spot...I said terminate.  I mean, really, I want to keep my options open.

I actually don't believe in abortion for myself.  I don't think I could ever go through with it, it would severely mess me up for the rest of my life (mentally).  I do know that my husband is of the type to say: "We can't afford a down syndrome child, and think of our other kids...plus this new one.  Who would take care of the kidlet when we died?  We'd be essentially destroying this new child's life (due to having down syndrome) and our current children's lives by forcing their sibling onto them to care for."  He made some good points, but I still doubt I could/will go through with it.

So, after stating what I would do...I was immediately sent to a nurse/receptionist to schedule seeing our geneticist.  I had to inform said nurse/receptionist of my intentions (still not even decided), and she lost it on me.  I am destroying a life, how dare I even get pregnant...yadda yadda.  I was already thinking all of that, and it hasn't even been decided whether or not it has DS yet.  But, way to make me feel terrible about a PERSONAL ON THE SPOT DECISION!

Naturally, here in this state...there is something in the water with children having special needs kids or medical issues with their children.  The town we live in, they actually demolished all 3 High Schools.  One of which, is being turned into a special needs ONLY school.  It's a tiny town, too.  So, we see special needs kids all the time and have had lengthy discussions on whether we could live/handle/raise a special needs child.  I am really not sure I could allow myself to bring a child into this world, KNOWING the quality of life they'd live would be just TERRIBLE...but that is me.  However, we see it ALL the time and are constantly reminded about what *could* happen...it is not a good feeling/situation to have to be in.

So, I let the nurse rail at me...but find out the doctor here in town is fully booked until Nov. 12th (and only is in office on Wednesdays).  Thus, that would put me well past the 20 week mark (and really, I don't trust that nurse/receptionist to not lie to me about him being booked, just for her own personal beliefs).  In this state, there is actually a special clause in their legislature stating that if you are past 20 weeks...and your child is diagnosed with down syndrome, that you CANNOT terminate.  According to the powers that be, the quality of life of a DS child is NOT that devastating and we should "deal with it". I am not in agreement with that.  If you truly cannot handle a special needs child and know beforehand that it will 100% be a special needs child...it is your personal family decision.  Not all families would be able to lovingly raise a special needs child, including probably mine.

(Side note:  After we set up the appointment, I started having nightmares about giving birth to a living baby and the abortion clinic suffocating my living child.  Then I started having nightmares about giving birth to a dead baby.)

So, today, I had my appointment in another town (3 hours away).  When we first entered the room, a nurse did an ultrasound on me.  She was surprised I was even getting on and we were unsure as to why.  My husband and I assume it is because the hospital/nurse/receptionist that set up the appointment is VERY pro-life...so, I am guessing after her flip out on me that she wanted me to "see" the baby I was going to kill.  Awesome.

But, ultrasounds do nothing for me.  Holding my baby is how I bond with it...until then, who knows if I will miscarry or what...so I try to stay detached as possible.  Not all mothers are like this.  I actually get creeped out by ultrasounds.  I also am a big believer in my baby in my tummy being a parasite.  Sure, I will connect with it...but not go "ooh" and "ahhh" during an ultrasound.  Just does nothing for me.

I saw a fantastic guy.  He told me that actually the type of test that was used is supposed to be used during the week 14-16 mark and that it had been done REALLY early (on the exact day I turned 14 weeks, actually).  He said my chances were actually 1 in 69 and more like 1.5%.  So, not as bad as originally described -  at all.

He also told us that the test that was done was not even close to being accurate.  That he was surprised I was referred at all.  However, if done correctly (and this test wasn't originally done correctly) it can be about 80% accurate and is mainly based off the hormones in my body (which have been wonky for a long time).  He suggested we take another test to check for additional chromosomes in my blood that contain the baby's dna, too.  This new test is 99% accurate and almost impossible to mess up.

I did the test.  They actually made me watch the 7 vials of blood being drawn (I am terrible with my own blood), and make sure that it was being done correctly.  So, after a total 6 hour drive and 4.5 hour appointment...we are home.  Finally.

So, we are currently awaiting the results.  It will take a week more.  It costs about $1,000 without insurance but the company doing the test is going to only charge us $200.  Phew.  Not that bad.  We have 1 week for the test results, and are sitting here biting our nails. If I don't receive a call by next Thurs, I will call on Halloween and get the results.

We are still undecided on what to do.  We don't even have a history of defects in either of our families, dating back hundreds of years.  So, we aren't really sure WHERE this came from, let alone how to handle it.

By the time we get the test results, I will be 18 weeks pregnant and have two weeks to make a decision.  I am stressed beyond belief and worried.  I also is a high chance of being another boy.  Naturally, the baby is super tiny...but the ultrasound technician guessed that it was a boy.  So, we'll see.

I will get a LOT of hate for this post.  I haven't told my own family yet and if the time comes to terminate, I will tell them I had a miscarriage instead.  But, I haven't decided yet, still.  It is a sad time when the truth cannot be let out, just because of judgmental assholes.  Sure, you may have a special needs child yourself...but that doesn't mean I HAVE to have one too or that I should let you sway my decision.

Not many people realize how big of a decision this nor how it would negatively effect our family.  We have the money for another child, but not for a special needs child.  We have the love for another child, no matter what...but it will really negatively effect our other children for the rest of their lives.  I'm not sure I want to put my entire family's future in jeopardy just because my medication cancelled out my birth control.  This child would not receive the best opportunities/life because of their condition.  This is a VERY hard decision.

But, as I said, we are currently still weighing the pros/cons and trying to decide what to do.  Who knows...the kidlet might not even have down syndrome at all.  I am SO done with having kids after this.

I also feel like I am "playing God".  I don't like this situation, especially since I tend to be a VERY logical person not swayed by emotions (most of the time).  I just don't know if I could handle, or my children (when grown) could handle a perpetual child.  What about all of the money involved in physical therapy, doctors, etc?  What about how this child would be bullied or seen as stupid 24-7?

PS. I have also been spending a LOT of time researching down syndrome, and feel fully prepared to discuss our options when/if the time comes.  My best friend has a cousin (that he takes care of) with down syndrome.  He understands exactly how difficult it can be on a family.  He is not mad at me for deciding whether to terminate or not.  His aunt even talked to me about it, and she is in agreement that if she had known (yeah, she's a terrible person! pfft...she loves her daughter to death) that she wouldn't of had a special needs child.  She said that she didn't believe in abortion, and knew that it would really negatively effect her family and herself...but still kept the baby.  She said that while she loves her daughter to death, she has been miserable with her choice ever since. I can understand her feelings on this.  That doesn't make her a terrible person for admitting she might have done things differently.  She is a fantastic mother to her DS daughter, but she was effectively FORCED into it - without a choice.

Also, one of the major problems with our decision is that we wouldn't even know the full effect or how "bad" the child's down syndrome would be until AFTER birth. There are varying degrees, and the severe degree is just TERRIBLE.

One of the worst parts is: my eldest daughter has claimed the new baby as her baby.  My youngest claimed my 9 month old son already.  They know I am pregnant.  I might need to break the news to them that either we terminated or the new baby is very sick...

Update:  Results came back, finally.  I called back on that Monday (6 business days later) and the nurse told me to call back again on that Friday (10 business days later).  I called on Thursday, and the geneticist said we have nothing to worry about.  100% free and clear of any type of abnormalities in the Maternit21 test.  I am scheduled for another in depth ultrasound (3 hours away) in about 3 weeks. We assume nothing will go wrong, as the actual test is more accurate then the ultrasound.

Also, we were told it is most likely a girl.  Phew.  So much stress gone.  (Side note: geneticist and my sister were both PISSED that I had basically wasted my time with such a very LOW chance of the baby having DS.  The results came back to be about 1 in 25,000 of having DS.  So both were pissed the OB made me worry for so long over basically nothing.  I'm just happy to know and happy it's over with.)


Update: 12/9/14

I did wind up getting the results, obviously.  I also went to my scheduled ultrasound, at exactly 19 weeks and 5 days (2 days shy of the cut off for an abortion, and it IS listed in my chart so others know).  Did you know it was possible to piss of a super gay ultrasound technician in a hallway?  Well, now you know you CAN and it takes very LITTLE effort.

I showed up at my appointment 20 minutes early, as always.  We waited over 45 minutes AFTER my appointment time to actually be called in.  This is actually unsual.  We usually don't have to wait long at all to get seen for an appointment that was made WELL in advance.  Good thing hubby and I both always bring books with us to read.

I found out while waiting that we owed our geneticist $89.00 for our previous appointment with him, and for some reason the hospital was once again trying to double dip.  They didn't even attempt to call my insurance - again - and were trying to get me to pay the money AS WELL AS CHARGE MY INSURANCE.  This is insurance fraud.  I am not a fan of it.

So, we are walking down the hallway and the ultrasound technician tells us basically what he will be doing.  Well, no shit.  I made sure to mention exactly what my doctor told me to say: "We are also checking for any additional signs of down syndrome, as we just came back from the geneticist and were told to look for any strange markings."  The doctor was still unsure as to why the original blood test came back so abnormal, so we were triple checking just to make sure.  Simple, right?  Apparently, not.

He loses his shit.  I mean just LOSES IT.  Starts flipping out in the middle of the hallway (arms flailing, etc), with people passing us, about how he is ONLY checking for a healthy baby.  Huh?  No shit.  I just need to know if there will be a cleft lip, hole in the heart, etc.  Additional markings for Down Syndrome (duh).  He continues flipping out about how down syndrome isn't a death sentence and is STILL a health baby.  (That is a matter of opinion, but whatever.)

I start to walk away and my husband grabs my arm.  He tells me not to leave, because we need this appointment and are running out of time. Sadly, my husband had a point - so I stayed.  Finally, I stated very firmly: "You do realize you are screaming at me in the middle of a hallway, yes?"  Ultrasound guy goes off on a tangent again about "healthy baby" (....okay....).  My husband steps in and says, "We understand you will be looking for a health baby, we are looking for a healthy baby too.  We just want to make absolutely sure that there are no health concerns to be dealt with later."  (IE: Check for the stuff we want, and do your job...stop flipping out).  Guy instantly calms down about 10 notches and walks us into the ultrasound room.

When we got IN the room, it was like night and day.  He was super nice to my husband.  Ignored me completely, like I wasn't even there.  All questions or comments were directed at my hubby.  What an asshole.  I'm not just a fucking incubator.  (Oh and he also thought we were first time parents, when he heard this is #4...he started to be even more nice to my husband.)

It turned out there are no health concerns either.  No issues with heart, heart beat, cleft lip, too large nuchal fold, etc.  So all that fuss?  Just because he had to do his damn job.  Yes, it is a girl, it was confirmed with asshole ultrasound technician.

We are happy with the results, but unhappy with how we were treated.  My husband swears I swear a special perfume that attracts nutjobs.  I am starting to believe him about that.

Wait...We're Pregnant?! Symphysis Pubis Dysfunction, Bartholian Cysts, etc.

We are apparently expecting baby #4 on April 15th, 2015.  Apparently the medicine I was taking to handle my meningitis after-effects messed with my birth control, and now we are pregnant.  Fantastic thing to learn AFTER I am pregnant.  Sigh.

The worst comes into play now...  I am only 14 weeks, 4 days pregnant.  However, my symphysis pubis dysfunction has returned already!  My hip is officially dislocated (you read that right) by 1/2 an inch.  Last pregnancy, it wound up dislocated by a total of 4 inches by the time I gave birth.

Hip is dislocated again, officially/medically. I was hoping to make it past Halloween night, not so...says the doctor. She even laughed at my hopefulness and gave it to me straight (that woman knows me so well...). She told me to expect my hip to go MUCH sooner this time and be MORE painful...and it did/is. Hate it when she's right!

I'm hoping to "fake it" as much as possible before/on Halloween night, so it doesn't impede on the kids'. Also, hydrocodone does NOTHING anymore. The doctor said I might have to take oral morphine (wha...?!). It hurts. Bad. I thought last time was bad...but this is like a billion times worse and TOO soon (in my mind). I totally wanted to be in denial land a little longer.

I was put on bedrest a while ago, obviously...I didn't follow that. I am now reaping my rewards - and cursing my luck along the way. My own fault, but it was going to happen sooner or later anyway....I just managed to be a stubborn ass and make it sooner. I also wasn't supposed to bend over or pick anything up (including little man), but ignored that too.

On a brighter note: I only fell down the stairs ONCE so far. I quickly covered that up with a "Oops, I'm fine. Just tripped over the dog" for the onlookers. Score one for me!

Not looking forward to the "Wow! You're pregnant and in a wheelchair?! How do you even expect to take care of your kids! So irresponsible!" or some such nonsense from strangers. Yes, they really do say shit like that.

As per baby #4: heart beat is there, but a little iffy to hear most of the time. He (we think it's another boy) tends to stick to the right side and hide. Not surprising, since my bad hip is the left and I'm sure he avoids that spot like the plague.


Here is some information on it, and the last link is a really funny rendition of another woman with it (I laughed at all of her symptoms she listed, because really...that is exactly what it's like):
http://en.wikipedia.org/wiki/Symphysis_pubis_dysfunction
http://www.theguardian.com/lifeandstyle/2011/feb/19/spd-pelvic-pain-wheelchair
http://www.myhusbandateallmyicecream.com/2014/01/hips-dont-lie-just-normal-pregnancy-aches-pains/

Still deciding on the temp. handicapped parking pass or not.  I didn't get one last time, and that caused an immense amount of pain for me (and embarrassment while in my wheelchair).  This time, I don't want to spend 45 minutes walking (with help) across a parking lot JUST to get into my doctor's office.  I see people all the time using handicapped placards illegally...so why can't I get one legally and just use it?  Sigh...I'd still feel guilty about it, even if I did use one.  So, I am still deciding on it.

The physical therapist has been seen, and she said (once again) there is nothing she can do for me - aside to remind me of the stretches (which do nothing and hurt me for days after just doing ONE DAY of it). So, on my own again. Yay.  I WILL do the stretches/exercises without her, at home, but I don't need to go to any actual appointments with her...as they are the same as last time.

I tried the little pregnancy belt thing last time that they gave me...and it didn't help.  I will try it again this time, but I really don't think it will help much.  It's more of a "suffer and get through it!".  Only...5 more months to go?
 
Also: Intermountain Healthcare Hospital (where my OBGYN and delivery room is) recently passed an edict that they ONLY test for eclampsia via blood pressure at the beginning of your appointment. So, I am seeing an entirely separate doctor to make sure there is no protein in the urine (and for any OTHER signs). This was passed around April 2014 of this year. It is concrete and no amount of begging/worrying will change their minds.

They don't even take urine samples anymore and the hospital/OBGYN saw it as an unneeded expense (even if you have had eclampsia in the past like I did, they still won't do it).  It is not only a hospital procedure but also a part of Obama-care.  Fuck you, Obama.  Fuck you.

For those you nerds out there that have never heard of this...it effects 1 in 4 women and VERY often misdiagnosed as JUST pelvic girdle pain (much, much milder form and basically a "catch all" for any type of pelvic pain...my OB/ER uses that term to basically say: "oh that's pregnancy for you, lawlz"). Only 7% of women have long lasting effects AFTER labor. I am not one of those 7% (technically), even though I had hip issues (minor really) after little man was born...I didn't require surgery - so I don't think I should count. This is actually a serious issue, and NEEDS to be addressed more. There really isn't TONS of information out there, and it's very commonly undiagnosed/misdiagnosed.

Editted to add:  Last time I DID get an epidural when suffering from SPD.  I did NOT use a ribbon to tie around my knees beforehand.  That was a massive mistake.  Even with an AWESOME epidural, and not being able to feel contractions...I COULD feel the hip pain while I gave birth.  It was so intense the epidural didn't stop all of the pain.  Afterwards, it DID knock back into place a few hours later (and was super loud)....  Also, I gave birth on my back and the nurse/doctor DID push my knees up really far (and at one point had them in stirrups).  I'm sure that is part of the reason why I continued to have SOME hip issues after my last monkey was born.

I also did NOT get eclampsia because I was over/under weight, over 40, had had it before, or any of the other reasons they came up with.  In fact, I wasn't even diagnosed with my meningitis and eclampsia until 3 days post partum.  I spent about a month in the hospital with it and it was pure hell (kidlets couldn't visit due to flu and my own ban due to the infectiousness of meningitis).

I am actually not really looking forward to this pregnancy.  I am dreading it, actually.  I will love this little monster all the same (husband was getting a vasectomy in Dec!!!!), but I am in for ANOTHER terrible ride.

Update on the Bartholian Cysts:  Since having little man, I have NOT had another MAJOR issue with my cysts.  Maybe it was luck of the draw?  Maybe it was the fact that I wasn't stitched AFTER the birth.  I only had a very minor tear this past time (which actually got a little worse later, but nothing major) as he was out in 3 pushes....and they didn't even bother to stitch me.  I have had SMALL cysts come back, but nothing like before.  I am no longer getting the injections as I am currently pregnant again, and I felt I didn't need them anymore.  Sex can still be painful sometimes, with dryness, but also nothing major.  I DO have pain medication (for my SPD and meningitis effects), and those seem to work just fine on any smaller cysts I have gotten.  They do NOT drain on their own anymore, but tend to disappear over time.  This is probably do to the additional hot baths I have to take for the SPD.