As you read in my previous posts, my blood screening odds came out unfavorable in my “own” opinion as well as the doctors. They sent me to a genetic counselor. I felt awful being offered a “genetic counselor” actually. I feel as though I really have something wrong with my baby. It’s like the false feeling for women when they first decide to go to a fertility clinic as if they have something terribly wrong with them (which isn’t the case because fertility clinics are great).
I walked into the genetic counselor’s office at UCLA and immediately I saw other pregnant women there. We didn’t smile at each other as if we’re all awaiting our own fates. There were photos of flowers and other boring items on the walls of the already depressing room. The couch seemed like it hasn’t been changed for maybe 15 years. All in all, it wasn’t a happy place and everyone there seemed like they were waiting for some answer but we’re not here to get an answer today. We’re just here to learn about our options IF we actually have a down syndrome baby and WHETHER testing for it is the right choice.
I already know my answers to both questions so I had NO idea why I’m here. I really didn’t want to be there. It’s bad enough that I have to endure the pain of looking at my blood test results after trying for a baby for so long. It was heart aching to be in that dumb room all by myself. I didn’t want to be there because no matter what, I’m going to do CVS! AND if it’s a down baby, my husband and I have already decided we will be terminating it. Our lives are already hard enough and we just don’t have the energy and time to take care of a challenged baby let alone a normal one. So why did they still have me come to this appointment?
The counselor came and took me to her office where I sat down at a round table. She handed me a presentation folder (you knew she did this a million times a day using the same presentation folder). Her name was Lila and was “super” nice. She showed me the different kinds of trisomy abnormalities and then there were even pictures of babies with downs syndrome. I felt sick to my stomach. She then asked whether I was going to do CVS or amnio and I immediately told her that I’ve scheduled CVS for the afternoon since I’m already in early week 13. Therefore, I’ll be doing somewhat of a late CVS or she whipped out a letter showing I can do an “early amnio.” I didn’t know there was such a thing.
Either way, I signed “both” forms just in case the doctor was able to easily consider either or depending on my situation. I quickly left for my operating room after the meeting. Lila was my “go to” person for results as well as any questions on any genetic questions. Anything and everything you wanted to ask about the procedure or about abnormalities, she was the person to go to and find you the answer if she doesn’t know it already. Your ob would not know as much as a genetic counselor usually. I guess that’s the real benefit of going to a large well known highly ranked hospital. They have specialists in every field that can help you understand in depth what is going on with your body.
Operating room. There was no operating room. It was the original ultrasound room! That made me feel better like it’s no big deal. 1:30 pm. My bladder was full. Doctor wasn’t here yet. Dr. Koos is the head of fetal medicine or something of that sort at UCLA. There’s always a head guy that does this procedure. Someone who is experienced and has done a lot of these. It is VERY IMPORTANT you choose a large institution to do your CVS and amnio procedures. You need someone with a lot of experience and skill because there’s a risk of miscarriage. Although the historical average of miscarriage rate for CVS is higher than amnio, I don’t believe that is the case anymore. Everything is ultrasound guided now as with before they blindly poke a needle in your tummy and “hope” to get the sample without seeing whether they had harmed the baby in the past. Now since everything is ultrasound guided, it looks crystal clear on the monitor where the needle is.
This is where they take the needed and go abdominal (above). If you do vaginal, see below:
For CVS and amnio, the procedures are exactly the same. They take a needle (about 6 inches long in my opinion) and they poke it in your lower abdomen. Then from the ultrasound, they put the needle in until they get either the placenta or the amniotic fluid. Then they suck and retrieve the sample, take out the needle and you should be done. Sounds easy but it’s really not. First, I hate needles let alone one that is 6 inches that will be drilled into my stomach. Two, there’s no anesthesia. I have a really high pain tolerance but cannot bear seeing myself get poked. Anyway, no time to fear right now as I’m waiting for the doctor.
2:00 pm. Doctor is still not here. My bladder is about to explode. Hope he gets here soon.
2:15 pm. Doctor is here! Hurray! As of this point, I just want to get the procedure over and done with as I’m about to explode! He shakes my hand, says hello and asks me if I’m feeling ok. Yes yes, please get on with it. Dr. Koos seemed very tall at the moment while I’m on the ultrasound table. He’s about in his late 60’s I would say or 60ish? Seems like he’s been in medicine for a long time and I felt safe. He was a bit odd in demeanor as all doctors are in their own way. He slipped on his gloves, two nurse were there running around grabbing items here and there. I have no idea what they were grabbing and really didn’t want to know. She took a cotton swab and dipped it in a red solution and wiped it over my tummy.
The ultrasound machine turned on. I can see the screen. It’s like I’m watching a horror film and I’m the subject. It’s as if I’m the victim “Saw” but I’m watching myself get tortured and I can feel everything. My heart is beating faster now. They have now squeezed a bunch of ultrasound gel on my tummy.
He now moves the ultrasound bar around and takes a look at my uterus, the position, and the baby’s position. He finds a small fibroid and said that must be avoided. I agree. That would be painful and unbearable if he poked into a fibroid! I only had one I knew about an it was tiny. Most ultrasound technicians miss it but he didn’t. He saw it right away. The nurse even said it wasn’t a fibroid but I knew it was so I immediately told him that I did indeed have a tiny fibroid. Immediately I was impressed with him and felt much better about him operating on me. Very experienced indeed.
After about a minute more of maneuvering, the crazy needle came into sight. Oh my GOD I am so nervous. Then he inserted it and with a few pulses of downward action (which seemed like it took forever but it really was less than 30 seconds) he shifted the needle down into my abdomen. Did it hurt? Yes but not like I imagined. It’s like getting a shot directly on your stomach but a little more pain than a shot. I was watching the monitor. He sighed. Oh no, what?! He pulled out the needle and said the placenta’s placement is too down below. They wanted to empty out my bladder a bit.
WHAT?! You mean the procedure is not over???
I wanted to cry but instead try to turn on my side. To my surprise, I was in excruciating pain in my abdomen. My baby was still there and alive and the needle was just a needle. Could it have pulled a muscle? Could it have hurt a muscle? I have no idea but I wasn’t able to turn on my side it felt like. I wish my husband or someone is there to give me a hand but everyone was out of the room and my husband was in another country at the moment. I breathed deeply and with one swooping motion, got myself to sit up. I slid off the bed and pulled my pants up slowly as I’m in huge pain.
I walked “very slowly” towards the bathroom. Letting out my urine was extremely painful. I then discovered my pain was from my full bladder! My bladder was so full I couldn’t even function. I tried to let out only half my bladder even though I wanted to let out all of it but managed to let out half. Man, that felt good!
Second try with the needle (poked in a different place this time). Success! I was over joyed. This time I got up quicker and went to the bathroom and emptied out all my bladder. When I came out, the nurse frowned at me. What now? She said, we got the sample but it wasn’t enough to test they’re afraid. They asked whether I wanted to come back another day. NO WAY.
Now I really wanted to cry. Then I did it a third time. With empty bladder. This time it was a success and faster than the other two times. I now have three marks on my stomach. But it’s finally done and over with! Enough samples and I’m done! I laid in the ultrasound room for about 10 minutes. I told them I needed some rest. My mom came in face all white from fear. She had saw the nurse running around and thought something went wrong. She worries way too much all the time and that’s why I didn’t have her in the operating room as the last thing I needed was my mom to faint while I did the procedure.
During the procedure they had asked me whether I wanted to do this procedure vaginally. I declined knowing that I have a “triple” curve in my uterus. I was told this before when I had done my IUI. Plus, the chance of you bleeding after the procedure with vaginal was almost certain. I didn’t want to see “any” blood after my procedure in fear that I may have lost the baby or had a miscarriage. That would freak me out. I also found that the needle procedure was a lot faster. This is the catheter where they collect the samples:
You may have a different experience or opinion but I strongly recommend:
- You do an abdominal.
- You find a large institution with a good ob ranking. In CA, you have UCLA, Stanford and UC San Francisco. I wouldn’t go anywhere else for this procedure if you’re in CA. If you’re in Illinois, Northwestern is the only choice.
- Don’t have an ultra full bladder or you may be in pain after the procedure like me.
- Don’t drink sugary drinks prior to the procedure as you don’t want to have your baby be too hyper during the procedure ESPECIALLY if you’re doing amnio instead of CVS.
- Always ask that particular operating doctor what their track record is on doing the procedure in terms of miscarriage rates. Don’t by shy to ask. You must ask!
Hope this helps and I welcome any other comments and experiences! Just so you know, I asked Dr. Koos how many miscarriages he’s had with this procedure. He said “one” because that woman had a lot of large fibroids. I felt good. My friend who did it at Northwestern said the doctor said non in the last 15 years. That’s the kind of track record you want. Ask them how many they’ve done and how many miscarriages have they had. NEVER not ask!
I chose a CVS because I wanted to know right away and didn’t want to wait. CVS has a thing called FISH where they give you a quick result in just 2 days time and full result in 2 weeks. The result in 2 days will tell you whether you have the right number of chromosomes. 99% of the time if the FISH is normal, the full report will be too. However, 1% of the time there would be some other very rare abnormalities that don’t show up on the quick result like mosaicism. In that case, you will be offered to do amnio since it could be an abnormality that’s confined to the placenta (CVS) and not the baby. Amnio will give you the result showing what is “confined” to just your baby so even if your CVS turns out bad, your baby may still be normal. You’ll have to do an amnio to find out. As for amniocentesis, results are slower. You’ll have to wait almost a whole month for your results to come back. Because most women do amnio in weeks 15-16, you won’t have your results until you’re 20 weeks into pregnancy. At that time, you can already feel the baby kicks, etc. and if you’re going to terminate, I think it makes it psychologically really hard and painful.
Either way, keep a bright outlook. Most women turn out to be normal. Our baby girl was normal and I was just super happy to know that. It was a huge relief.