The Imperfect Community

TheBean · Posted: Sun Dec 05, 2004 9:26 am Post subject: I'm sad, and I'm confused.

Thank you all for your prayers. I need them right now.

I thought I would just paste the journal I am keeping here - it is kind of personal, but nothing earth shattering. I'm not interesting in purseing any kind of legal action - but I DO want answers. And none seem to be very forthcoming right now.

My doctor is VERY compassionate. He is extremely shook up and saddened by what happened. I know he will never forget this, and I think he WILL talk more about the risks of this procedure with his patients from now on. I was an informed patient - I knew the risks but I feel today that the risks were poo-pooed.

I told the Dr that to others - that .05% increased risk of miscarrying after an amnio versus not doing an amnio- may mean nothing. But to ME...I KNOW that could be me. I KNOW this because both my sisters had children and THEY were that tiny small risk. It was REAL to me.

Here is my journal. It may not make much sense, but I spent the morning typing it, and it kind of gives you an idea of what all happened....not on Thursday when I had the amnio necessarily - but a lot of other stuff.

Sunday – December 5

I’ve been playing over the amniocentesis procedures in my mind. I can’t sleep. I keep seeing images of the baby moving around and his hands up around his head/face before the procedure – and then afterwards the baby just lying there not moving. That is what I see everytime I close my eyes.

The thing that struck me odd that morning was how dirty the ultrasound keyboard was in the room. I wondered – gee, I hope they cleaned the ultrasound wand. They had a tray all laid out to do the procedure – but this piece of equiptment looked like someone had spilled coffee or gunk on it 2 years ago and never cleaned it up.

I also was surprised – Dr. B’s back was to the ultrasound machine. I thought they used the machine to guide the needle into me to make sure it was a safe spot. He only used the machine to decide where to put the needle in. Angel, the nurse, was the one that ended up holding the ultrasound wand thing – and she was the only one positioned besides Bob and I to see the screen while he was putting the needle in. Why didn’t I ask him about that?

I saw the tubes of fluid afterwards. They seemed kind of red to me – not sure if they were tinted tubes or that was the fluid though. Why didn’t I ask him about that?

Afterwards the doctor couldn’t find the heartbeat. I could tell from looking at his face he was worried, and how he was pushing on my uterus to find the heartbeat with the Doppler thing. He commented that his regular Doppler was in the shop and this one was a loaner and not very good.

He tried finding the heartbeat with the ultrasound and then called an ultrasound tech in. I wonder why she wasn’t assisting during the procedure.

Then we went to the other room to use the better ultrasound machine. I wonder why that machine wasn’t used during the procedure.

Basically, on Friday I thought everything had seemed textbook about the procedure- it only lasted like a minute. But now all these little things just seem to add up.

Dr. B never told me he went through the placenta to get the amniotic fluid. I was under the impression from the little bit of information I was able to find out about amnicentesis prior to Thursday, was that miscarriage might have something to do with the amount of fluid being withdrawn/what was left over for the baby. I didn’t know any risks about going through the placenta. Did he KNOW he was going through the placenta prior to the procedure? Isn’t that something you can see on the ultrasound? And if so, you would avoid it?

When I was sent to Maternal Fetal Hospital they pointed out where the placenta was. They measured the baby for me. They didn’t do any of that prior to the ultrasound. They didn’t even measure the heartbeat prior to the ultrasound…only afterwards.

Come to think of it – they never measured the baby’s heartbeat – or at least told me what it was. Until on Wednesday when I saw Dr. B and he found the heartbeat with the Doppler. I asked him what the rate was and he timed it with his watch and told me 135.

I’m incredibly sad. I felt up to Thursday my care was kind of mismanaged. I had to raise cain to get to see Dr. B it seems. The initial intake/interview girl was really ill-informed. I was asking her about early screening for downs and birthdefects like the NT scan and blood tests and she looked at me like I had lobsters coming out of my ears. She had no clue what I was talking about – she didn’t know about CVS - only the Quad Screen. I was really pissed and angry about that. I knew more than she did, and this isn’t even My field of practice!

I was surprised that my FIRST OBGYN visit at 12 weeks wasn’t with Dr. B, but he nurse midwife. I asked her about the NT scan and blood tests and my concerns with having an amniocentesis and she said I would have to talk to Dr. B and my next appt should be with him.

I was surprise that I had to have a hissy fit to get INTO see anyone prior to 12-weeks. The NT scan needed to be done before 12-weeks. THAT much I knew. I kept fighting on the phone with nursing staff that I was 38 years old,had a family medical history, and I should be seen prior to 12 weeks – and all I kept hearing was it is our policy to wait till 12. I finally DID talk to someone that heard me and discussed my concerns with Dr. B and I did get to meet with him for 10 minutes to talk back in October, prior to my first 12 week appt. Thank God I was sent over to Quantam Imaging to at least have an ultrasound to see how far along the baby was. I asked the technician there to do a NT scan and he said it was their standard procedure and he would be doing that. Unfortunately he couldn’t get an image. I told Dr. B that – I wish they would have sent me back over to do the measurement again.

I was really surprised when Angel called me to tell on Wedesday Dec 1 I had missed an amniocentesis appt. I told her, “Uh I think NOT. I have never agreed to have an amnio, as I have YET to talk to a doctor about my concerns with a miscarriage are, and what my other options are.”

I’m really really sad. I might have still gone through with the amnio. But I wish I would have demanded more information. I should have asked Dr. B WHY I didn’t get referred to have the NT scan when I wanted to – and if it was too late for that. I should have talked to him about just using the ultrasound to check things.

I should have at least postponed the amnio until 2 weeks later so I could have researched stuff more. I had it done at 15 weeks. I now know I could have had it done later – I didn’t really understand why I had to have it done last week…and it couldn’t wait until 2 weeks later when it suited my schedule better. That would have gained me time to find out the things I know NOW about the procedure – and the risks/concerns with going through the placenta. I would have wanted to know if we could avoid the procedure if that was the case since my uterus is tilted. (not sure if that came into play in the location of the placenta or not?)

Why wasn’t I sent somewhere like the Maternal Fetal Unit where they have great ultrasound equipment to do the amnio? Why was it done at the Dr’s office.

All of this just slaps at me that it is about money and business – not providing what is in the best interest of the patient. There are flyers all over the practice about insurance and malpractice rates being so high. They now have cosmetic surgery in the same building with the obgyn – for spider veins and stuff – those posters and flyers are all over the practice. I kept asking about this NT scan and other testing, and all I heard was the amnio was the best way to go. No one talked to me about waiting until 20 weeks – or even GOING to maternal Fetal Hospital where they have 4-D imaging equipment. Dr. B KNEW that I was not going to have an abortion – that the reason I wanted to know if the baby had a problem was for choice of delivering at H. Medical Hospital (major research/care hospital for this area) , and being able to set up social services prior to the baby arriving.

I just keep thinking – did they keep me there to have the amnio because business wise it made sense – and they had NEVER had any complications or problems before – it was a simple procedure for them. Despite they had a patient that kept asking all kinds of questions about it.

I find it ironic that of ALL the people to end up having a baby die due to the amniocentesis – it would be ME…the person that raised cain about talking to a Dr. about the risks, and having concerns about doing the NT scan to begin with. And there are other women that probably didn’t ask hardly any questions – and things went fine with them.

I’m incredibly sad about losing my baby. I know it was due to the amniocentesis. I don’t “Know” that – but I know. And I am as much at fault as the doctor or anyone else. I had concerns. I had doubts. I didn’t listen to ME…I didn’t do what was in the best interest for my child. I AM my child’s advocate…not a doctor….not a practice.

I should have made other phone calls. I should have called another practice. I didn’t do any of that. I allowed myself to be pressured into doing something that I shouldn’t. I will never forgive myself for that, nor will I ever allow that to happen to me or my child again.

Jessica · Posted: Sun Dec 05, 2004 9:43 am Post subject: I'm sad, and I'm confused.

Oh, Eileen. I'm so sorry. I just don't even know what to say.

It is NOT your fault. You are not a doctor. You are not the expert here. I have never heard of an amnio being done in a doctors office. In fact, my sister had to go to a specialized maternity unit at Rush Presbytarian hospital to get her's done. They did a high tech ultra sound before her amnio.

I don't care how compassionate your doctor is, this was IRRESPONSIBLE of him. I'm not trying to make you feel worse for laying blame, but I can't help but being really pissed at this so-called doctor. 15 weeks is really early to be getting an amnio and you trust that these people have you and your baby best interests in mind, as people and not cost cutting numbers and/or statistics.

I know everything happens for a reason, and for some reason, perhaps this baby is being saved from something that might have happend had he/she been born. I truly believe that in the spirit of faith, that your baby was ultimately being protected. There is a special place in heaven for babies and children, and your little angel gets to experience paradise before he/she ever had the unfortunate experience of sadness or pain.

Bless your angel, Eileen, and peace be with you. I am just so beside myself, in trying to understand your pain. I am...just sorry.

TheBean · Posted: Sun Dec 05, 2004 10:00 am Post subject: Re: I'm sad, and I'm confused.

honeybee · Queen of Imperfection Joined: 20 Dec 2002 Posts: 3163

Eileen, I am truly heartbroken for you. I am so very sorry.

DietCokeHead · Queen of Imperfection Joined: 29 Apr 2002 Posts: 3805

Eileen,

I am heartbroken for you too! It is so hard to fingure out exactly why some things happen the way they do and sometimes we never get a reason, which is hard. I hope you can get some comfort from your faith now.

Rebecca_R · Posted: Sun Dec 05, 2004 8:08 pm Post subject: I'm sad, and I'm confused.

Oh Eileen, I don't even know what to say. I just want you to know how incredibly sorry I am that you have lost your baby and that I will be thinking of you.

If you need to talk, you can email me, PM or whatever. I don't know if you remember (were you around this site back then?) but two years ago exactly I went through something very similar. It's almost weird for me to think how similar my situation was to yours. My baby died, around 16w (unknown reasons, not an amnio) right at the beginning of December.

I can really feel how sad you are through your post. I am crying inside for you. I wish I could reach through my computer and give you a big hug.

If you need anything, please contact me. I know you might not feel up to it right now, but something that really helped a few weeks after my loss was finding a therapist. Hospitals also have support groups for women who've suffered pg/child loss. It really just helps to talk to other people who are going through the grief process. I know you are religious, find out if your church offers anything. Or if you want something more low key, babycenter.com has a few pg loss boards that offered a lot of emotional support to me.

Mostly, I just want you to know I am thinking about you. I wish there was something I could do or say to make you feel better, but I know that is pretty much impossible. Crying or Very sad

Princesso · Posted: Sun Dec 05, 2004 11:10 pm Post subject: I'm sad, and I'm confused.

i know there is nothing I can say that will make a difference or even probably make you feel better, but I wanted you to know that I'm thinking a lot about you and your family and I hope that you find healing in this.

MainstreamMom · Posted: Mon Dec 06, 2004 11:29 am Post subject: I'm sad, and I'm confused.

I am just so heartbroken for you Eileen. You did the best you could with the information you had at the time. Big HUGS to you.

Rebecca_R · Posted: Mon Dec 06, 2004 11:48 am Post subject: I'm sad, and I'm confused.

I am just so heartbroken for you Eileen. You did the best you could with the information you had at the time. Big HUGS to you.

I agree. And it's natural to blame yourself, even though in reality none of this is your fault. i even blamed myself for my loss back when it happened, you think of all the things in your head you could have done differently to still have your baby. But after some time you will be able to look back on this and realize just how little control you had over the situation. Hindsight is 20/20, unfortunately.

I think if I were in your situation, I would try to find a different ob to have my post-partum checkup with though. I know that might be a lot to think about right now, but you do not trust this guy so you should not go back there. You can call the social workers at your hospital, explain the situation, or even the nurses who helped take care of you and ask what are the favorite obs they like to work with. You could even call ob triage and ask what are the obs with the most patients at that hospital. I did that and that is how I found my current ob, they are highly in demand at the teaching hospital downtown and really back up their reputation with a wonderful bedside manner.
At any rate, I am completely rambling, but I do think that when you are ready to move forward this would be a good idea. You could even tell your story to this new ob that you find and see if they agree with how mismanaged your case was. It really sounds like it was!

I just can't stop thinking about you Eileen. I hope you are okay. Are you at least going to get a good vacation from having to go back to work?

Scout · Posted: Mon Dec 06, 2004 3:29 pm Post subject: I'm sad, and I'm confused.

Oh Eileen, I am just so terribly sorry that this has happened to you. I can only imagine how you must be feeling. I think it's really healthy to be writing about it in an effort to work through your grief. As others have said, you are not to blame, although I know it's almost impossible not to feel like there's something you could have done to change the way things turned out. That's part of the "bargaining" stage of grieving. You should be able to trust your doctor and know they are doing what's best, not what's cheapest or fastest. We all have those moments where we can look back and remember a "nagging feeling," but the vast majority of the time, life is just moving to fast for us to even register those feelings. Hindsight is 20/20, but when you're in the moment, it's just very difficult.

TheBean · Posted: Mon Dec 06, 2004 4:28 pm Post subject: Re: I'm sad, and I'm confused.

giantteeth · Posted: Mon Dec 06, 2004 5:40 pm Post subject: I'm sad, and I'm confused.

Hi Eileen- I know you have no idea who I am, but I'm sorry you have to go through this.

My husband and I went through a similar loss with a pregnancy at about 20 weeks.

I hope the support you are getting from people at this site helps; definitely it's good that your boss took care of telling all the work people- it's not something you want to tell people over and over again.

Anyway, my thoughts are with you; I know what a numb state you must be in right now.

Jeanette

Sewingsiren · Posted: Mon Dec 06, 2004 8:48 pm Post subject: I'm sad, and I'm confused.

My heart goes out to you, Eileen.

Sewingsiren · Posted: Wed Dec 08, 2004 8:41 am Post subject: I'm sad, and I'm confused.

Eileen, At the risk of ending up on the "Things not to say" thread, I just wanted to add one thing. I've been thinking about what you said in your o.p. about being at fault and I realize you wrote that several days ago and I sincerely hope you no longer feel that way. However if you do, could I just frame it in a different way to help you see that you are being a little too hard on yourself. If what happened to you happened to a friend, or your sister, or even a stranger on the internet, would you listen to their story and think that it was the mothers fault? No ,you wouldn't would you? I hope looking at it this way helps you to take some of the blame off of yourself. I feel very nervous to post this lest I say anything that would make you feel worse.
I would like you to know that while I would never presume to say " I know how you feel". I do have some idea as I have had three miscarriages myself .
Best regards, SS

TheBean · Posted: Wed Dec 08, 2004 1:28 pm Post subject: I'm sad, and I'm confused.

SS....I kind of feel the same way, but I don't blame myself for the baby dying at all.... I just blame myself for not listening to my instinct and voice.

Everyone here has been incredibly helpful in listening to me moan on about this. I know it is hard on others to deal with someone in grief, and I really do appreciate all the support and comments. I think you are all wonderful right now.