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27-5-2008 - Bad NT Scan experience

My mood while writing this blog: Ok

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My friend just e-mailed me her terrible NT Scan experience due to an untrained tech. Everything turned out ok, but it just goes to show you have to be your own advocate!!!!

On Thursday, May 22, I went in for a routine NT scan as part of the first trimester screening process. We really didn’t do a whole lot of research around the procedure and didn’t feel too worried about the results. We were, however, under the impression that the doctor (specialist, not our normal OB/GYN) would actually do the ultrasound and analysis. This was not the case. There were two ultrasound techs in the room with us, and it became apparent that the one actually performing the ultrasound was in training. She hardly communicated with us at all (we actually had to ask, “Is everything ok with our baby?” as she wouldn’t even point anything out to us – it was pure silence). She had a very difficult time capturing the pictures that the doctor would want to see in order to take the neck measurement. I had to empty my bladder, change positions a few times, and still after almost an hour – we still got the impression that she wasn’t exactly sure she had taken the appropriate photos to give to the doctor.

Regardless, the two techs left and promised the doctor would be in within about 5 minutes with our results. We didn’t realize that we would have results so quickly, which made us a little anxious. About 10 minutes later, the doctor came in and it was obvious she didn’t have good news for us. She didn’t even bother to sit down – she just said something like, “Unfortunately the nuchal fold is measuring abnormally thick – and this is a marker for Down’s Syndromes and other physical defects and heart defects. There is definite reason to be concerned and you might want to consider a CVS or Amnio.” She did go on to say that our baby could still be perfectly healthy, but that our risk of having something wrong with the baby skyrocketed from the original stats based solely on my age. She then proceeded to explain that the NT scan was only part of the screening process – I was still set to have my blood work drawn up, but that most women choose to skip that part and move forward with the CVS because the abnormal NT results are enough of a concern to justify this invasive test. Here was the other hitch – I wouldn’t have my blood results back in time before the CVS due to the holiday weekend. And, I was running out of time to get the CVS because I was already 12 and 1/2 weeks (most doctors don’t perform CVS after 13 weeks). She said she suggested I schedule the CVS for as soon as possible and I could always cancel. She left to do this.

I was overwhelmed with emotion and could not stop sobbing. She came back in to tell me the earliest any doctor could get me in was for the following Wednesday at 3 p.m. Again, she offered little to no comfort even though I was visibly shaken and upset. When my husband asked for details about what exactly the issue was and what it meant, she finally said, “I guess I’ll write down the name of this test for you” – she looked around, and finally pulled a piece of ultrasound photo paper and scribbled two words down. And, she wrote down the address of my CVS appointment and that was it. No CVS doctor’s name, no handout of information, no recommendation to call my own doctor, or to meet with a genetic counselor. NOTHING. And I would find out later that it was appalling that she didn’t give me the actual measurement of the nuchal fold.

We left and were reeling from this news. I immediately went home, called friends and family sobbing, and started doing research. I discovered that the risks involved with a CVS test were much higher than an amnio – 1 in 75 result in miscarriage. I found my fear started leaning away from the NT scan results, to what I was facing immediately – do I have this CVS test and risk my baby’s life? Or do I just trust that the end result would be what it would be regardless, and do I leave it alone? A long evening and night passed – full of stress, fear, sobs, research, and more Internet research. I was so frightened, but more so – I was realizing just how much physical stress I was putting on my body, and ultimately my baby. I couldn’t eat, couldn’t keep water down, and couldn’t sleep. I have never in my life felt that kind of fear and stress. It was obvious to me that I had to do something to change this, or I would risk my baby’s life – based on not taking care of myself. And, I found myself isolating and not including my husband in my full pain and sorrow. I knew that I was experiencing the fear on a different level than he was based on the fact that I was physically carrying the baby, but I wasn’t being fair to him and his own fears – and I knew that. Still, I couldn’t see past my own excruciating panic.

I turned to my faith in God and prayed and prayed. I prayed for direction. I prayed for peace in my body and mind. But most of all, I prayed for an answer on whether or not I was supposed to take this CVS test.

After not sleeping at all, I got up the next morning with the realization that first and foremost, I had to find out more about this CVS test and figure out if I could move forward with it. I did a lot of research on the doctor who was set to perform it and was comforted by his incredible experience and track record. Still, I wanted more. I called the office and asked to speak with someone about the procedure – risks, details, etc. The receptionist connected me with the nurse.

A nurse got on the phone, and while she was very nice, she seemed pretty unaffected by my concern – at first. Remember, this facility is a perinatal practice – meaning they only deal with high risk pregnancy testing and evaluations. So the only patients they talk to are people like me – scared out of my mind and facing the possibility of having a disabled (or much worse) child. I told her that I knew the national risks of a CVS – but that I wanted to know their official track record on it. She told me that legally they were only allowed to tell me the national stats, which were 1 in 75, but after pressing a bit further, she did tell me that the doctor had a very, very good track record. However, they had just experienced a miscarriage last week, and the CVS had seemingly gone perfect. She seemed upset to share this news – they obviously had been affected by it. My heart sank. She said that she shouldn’t have been telling me that, but she could sense I was on the fence about getting the CVS and she wanted to be up front about it. She then asked me what the baby’s nuchal was measuring (she didn’t have my records yet) and when I said that I didn’t know, as the doctor didn’t tell me, she was very shocked. The doctor that did the NT scan was associated with this perinatal facility, so the nurse said she would page the doctor right way to find out results. Then, she asked if I had thought about moving forward with my blood tests – in case that would help me decide if the combined risk would be worth taking the CVS test. I explained how I was told that I wouldn’t have the results back in time before my scheduled CVS, so I didn’t really think it was worth doing. She then explained that often times you can request a rush on blood work, and that when she works with her lab – she can make this happen. She suggested I call my lab back and tell them I changed my mind and ask them to rush results.

And then, I don’t know what came over me – but I just knew that I needed to get in the car and see this nurse in person (this office was in a different city than I live in – about 45 minutes away). I asked if I could come in right then and there and have her take my blood and have it rushed through her lab. She seemed a little confused about why I would want to do that, rather than go back to my own hospital and lab. But after some convincing that this would work best for me, she agreed. I got in my car and tried calling my husband several times to explain my conversation with the nurse and what I was doing – but I couldn’t get a hold of him. I arrived at the office asked for her, she said, “I’m Lisa” and took my hand.

We went back into her office and she went over the results that she had just received from the doctor. The nuchal fold was measuring at 3, which is very high and concerning. She did tell me that the nasal bone had been identified in the ultrasound, which is a good sign (another marker for Down’s is if the baby is missing a nasal bone at this stage). She told me that the doctor had said to her, “Lisa, the thickness was glaringly obvious – there is not doubt about it. She (meaning me) didn’t seem to be absorbing what I was telling her – we obviously shocked her with the results.” So, my heart sank again and I began to cry again (I have never cried so much in my life!). She took my blood and assured me she was going to rush the results. That was about it, but just as I was going to leave, I sat back down and asked her if I could ask some specifics about the procedure.

I told her that I was concerned that I would already be past 13 weeks for the CVS and I had read that greatly increased my risk for miscarriage. I also asked how they would determine whether they could do the procedure transvaginally or through my abdomen – another determining factor on how risky the procedure would be. She was impressed with my research and said that they were good questions. She told me it depended on where my placenta was and she then turned to my NT scan records to see if they made note of this. They had not and she seemed frustrated by this. Then, she said, “Come on …it’s a slow day. Let’s sneak back into the ultra sound room. I’ll turn it on quickly just to see where your placenta is.” She explained that she wasn’t a sonographer but she could do enough to see what we needed to see. She saw that my placenta was lying against the back wall which meant the doctor would have a harder time getting to it (the CVS is performed by collecting a tissue sample of the placenta) and would most likely have to insert a thick needle into my abdomen to collect the sample. She lingered on the ultrasound for a while and said, “let’s take a look around.”

Just then the baby waved its hand and we both clearly saw all five fingers, and Lisa gasped, “I just saw the pinky bone.” She explained that yet another marker for Down’s Syndrome is the lack of the middle pinky bone in the hands – and again, she had seen my baby’s pinky – another good sign. I told her that I was so thankful for her encouraging words, not to get my hopes up, but to reduce the physical stress and concern momentarily in my body. She lingered in the ultrasound further – and suggested we try to see the baby’s neck. After several views, she just kept saying, “I’m not able to diagnose, but I just don’t see this thick fold that the doctor said is so obvious.” She showed me several angles, and that we should be able to identify fluid around the head and neck fairly easily (if the fold was truly measuring at a 3). After some time, she turned the machine off, sighed, and said, “Here is what we are going to do. I’m going to talk our doctor into giving you another NT scan next Wednesday before your CVS – JUST IN CASE. I’m just not seeing the thickness, but I want to be sure.” I thanked her profusely for her kindness, attention and concern and I took the opportunity to explain about how our NT scan was performed by a tech that was obviously in training – and how we felt unsure about how it was performed. She didn’t say much, other than, “Well, Dr. XX is one of ours and she is very, very good.”

We went back into the office, and just then the doctor peered in- obviously confused and concerned about what Lisa was up to. She whispered to me – “He knows I’m up to something, I’m going to get in trouble but that’s ok! Let’s call him in here now.” She called him in and it was obvious he was disappointed in what she had been up to. But as she began to explain my initial phone call, and about what we had just went through – I swear I saw her tear up. She finally just said, “She doesn’t want a CVS, and…basically, I’m taking her under my wing.” I started crying again, and the doctor said, “It looks like you need a hug!” He came over to me grabbed my hand and hugged me, while I again – sobbed uncontrollably! He then tugged me and said, “Come on…” and led me back to the ultra sound room. Lisa explained that she was hoping he’d give me another NT scan prior to the CVS on Wednesday, and he said, “Let’s just see what we can see now.” Lisa then explained to me that I was lucky I had caught them today, as it was Friday before a holiday and she purposefully scheduled him light because he had been working so hard.

As he turned the machine back on, he explained to me that he was one of the doctors that actually first developed the research around this procedure (wow!! My luck!), and that it was still fairly new and they were still researching its validity and false positive results. He said that even the best of the best can often mistake the bottom of the amniotic sac as part of the baby’s neck, if the baby is laying just so. He then showed me what he meant – the amniotic sac that is (the baby was off on the side so wasn’t blocking it). He made sure to say that he didn’t know if this is what had happened to me – but that it can happen, and even he had made the mistake before. I then explain to him my “tech in training” story and how I just didn’t get the feeling she knew what she was doing and the doctor never once came in to see the live ultrasound – only went off the photos. At that point Lisa said, “Wait – the doctor never came in?” and I said no.

After some struggles to get the baby into position, this new amazing, compassionate doctor got the baby into a good enough position and snapped a photo. He measured the nuchal fold, sighed and set the ultrasound down. He turned to me, “It’s 1.3” and I asked what that meant and he responded, “It’s completely normal.” I shook, I cried, and cried and I cried. He asked me to sit up and told me that it sounded like I had a tech that was learning this procedure and had turned photos over to the doctor that had my amniotic sac masking as the nuchal fold – something that can happen.

He then explained that we would still have to look at my blood results to examine my risk, but that based on how far along I was, how my placenta was positioned, and how this new NT scan resulted (the NT scan accounts for 70% of the overall 1^st trimester risk assessment – the blood work only 30%), he would absolutely not perform a CVS on me – no matter what the blood results said. And THAT was what I had ultimately prayed for – I wanted to know whether or not I was meant to take the CVS test and he flat out said – NO.

I gave the doctor and the nurse a huge hug and thanked them for their care, attention and understanding. Lisa then told me they weren’t going to charge me for my time there. I couldn’t believe it. They had no reason to listen to me – my story was no different than anyone else’s, but for some reason they did. I felt pulled to that office that day, and action after action by this unbelievable nurse led me to the realization that the original doctor made a mistake on my original diagnosis.

I still haven’t heard back about my blood results – but no matter what they are, I have an overwhelming sense of peace now. God literally walked by my side that day and I have no doubt that this baby is going to be ok. Even if he/she is born with something abnormal, I have my answer – I know that he/she is meant to be mine and that I went through this astounding trial for a reason. I have a completely different perspective on the pregnancy now and what this baby means to me and my husband. It’s actually quite remarkable.

After leaving the office, I called my husband and told him every detail. He couldn’t believe it – but did say, “I just knew something was wrong with that original ultrasound - I had a very strong feeling something was wrong.” So – please – everyone ALWAYS ask for a second opinion! Don’t put your health solely in someone else’s hands! Trust your instincts! If I hadn’t, I would never have found any of this out!!! And, if you do believe in God, TRUST IN HIM!

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