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#1 of 18 Old 03-15-2012, 12:49 PM - Thread Starter
 
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Some of you may remember that on Monday I posted an "I'm out" thread. Well I started red bleeding on Monday morning and went to the doctor. They did an ultrasound and told me that I was miscarrying and that I should take Cytotec to help complete the process. Well I took the meds Monday afternoon and waited for the process to complete but instead the bleeding stopped. I went back to the doc today and it turns out there were twins and I only lost one. The other looks fine. Now for the really bad part, Cytotec causes SEVERE birth defects! I go back to the doc in a week and have to decide if I want to terminate now, go through a battery of fetal tests that won't be complete until 16 weeks and make a decision as to terminate or not based on the test results, or just go with whatever happens. An early termination is the safest procedure for me so my husband and I are leaning heavily toward that. We already have 5 children one of which is special needs and we do not have the resources to support another special needs child, not to mention the lack of quality of life available to a child with the kind of birth defects caused by Cytotec. I'm pretty much just shocked by the whole thing and haven't begun to emotionally process. My doc looked mortified and seemed really upset that he had prescribed the Cytotec to me and that there was still a living embryo. He didn't even realize it caused birth defects until I asked him to look it up upon seeing a heartbeat. UGH!!!!mecry.gif


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#2 of 18 Old 03-15-2012, 05:36 PM
 
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Patti,

 

Well, first, I am not surprised that this is the case because I saw red flags instantly when I read your initial post. I am livid at your doctor. I think you need to change doctors now. I am so mad I don't even know what to do. This is a classic case of misdiagnosed miscarriage and one day you may want to submit your story to that site I told you about.

 

It is a free country and you can do whatever you want. But I will hate myself if I don't give my two cents:

 

1. The baby may be absolutely fine. You would be killing a perfectly normal child based on a hypothetical situation that may not exist.

 

2. If the baby is born with birth defects, you have a solid lawsuit against that doctor. There are no loopholes here and any lawyer would take your case. The funds would provide care for your child.

 

3. If the baby is born with birth defects you can put him or her up for adoption. Give the child life and the chance to bring someone else joy if you feel you can't take care of him or her.

 

4. If the baby has very severe birth defects he or she may die before birth. There are organizations to help you if you are carrying a child with a fatal diagnosis. In this case you would not have deliberately killed your baby, your baby would have died a natural death.

 

[ETA: Because I hate to be uninformed, I looked up the possible birth defects associated with cytotec ingestion in the first trimester. Most of what I found said that if it didn't result in fetal death that it wasn't going to cause it later. I found this from 2004 (link):

 

Quote:
First trimester exposure to misoprostol is associated with a significantly increased risk of two birth defects ; Mobius sequence, i.e., palsies of cranial nerves VI and VII, and terminal transverse limb defects. Other defects including arthrogryposis have been observed

 

I didn't know what arthrogryposis was so I looked it up (link). Here is the prognosis: 

 

Quote:
Individuals with AMC are aided by vigorous therapy and in some cases surgical intervention. This varies to some degree, depending on the severity of mobility reduction.[5] AMC is not a progressive disorder. Typically these individuals have normal cognition and speech and therefore the potential for productive, rewarding, and independent lives.

 

Not surprisingly, I didn't know what Mobius Sequence was either. It is more serious (link) but the

"incidence of Möbius syndrome with misoprostal use [is] less than one in 1000 births." ]

 

I'm sure I'll be flamed here, but I can't look at myself in the mirror if I don't say these things. I am so sorry for what has happened here. It is uncalled for and your doctor has made a massive, massive mistake through negligence and harm. Please seek someone out if you need to talk about this together with your husband. (((((Hugs)))))  I'm so sorry. I will be praying for you and the baby.

 

[I am also so sorry about the loss of the twin. This is a cause for separate grief.]

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#3 of 18 Old 03-16-2012, 09:25 AM
 
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I am so sorry this has happened, I can't really imagine the difficulty of making this decision.

Last year when my baby was diagnosed with fetal hydrops (idiopathic NIH has about a 95% mortality rate and of the 5% who survive, often significant health problems) I was heavily pressured to terminate, and I was already to 23-24 weeks.

Probably the physical trauma would have been less than what I eventually had to go through, and I might even be recovered enough to be TTC now but I knew I would have struggled with the "what if"s. What if the doctors were wrong (yours was once already). What if he was strong and pulled through it (at 11 weeks my doctors saw huge nuchal lucency and advised that baby was probably deficient somehow, and its not common for NIH babies to live as long as my Maxwell did, given that early sign. He was very strong).

Unfortunately only hindsight is 20/20.

Your choice is your personal choice. And whatever you decide, commit to it 100% and try to eliminate the what ifs. You will make the best decision you possibly can and that is the best you can do with these less than ideal circumstances. If you were my IRL friend I would hug and support you no matter what you decide. All the options are hard because they're filled with uncertainty and scary, painful, stuff.

Looking at what info Anna provided (she seems to always have the right thing to say) I am optimistic for your little fighter. If the rate of the problems is small there is a good chance s/he is alright. You could try to focus on that of you want.

I hope you find clarity in deciding what is right for you and your baby and your family.

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#4 of 18 Old 03-16-2012, 10:04 AM
 
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What are the chances of birth defects? My concern about terminating early is if you will question later if you made the right decision and questions the "what if's". I personally would wait till 16 weeks and see if there really are deformities. Then you will know for sure. If you decide to terminate then it will be somewhat harder, true, but you would have the peace of mind knowing there was a problem for sure.

I just am unsure because of the chances, I am trying to google it, but all I'm finding is increased risk after several abortion attempts with the drug. Make sure you are knowledgeable about the chances, get a second opinion. You are in shock I"m sure, take your time to decide so you don't regret your decision.

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#5 of 18 Old 03-16-2012, 10:26 AM
 
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I mentioned this (anonymously) to a friend of mine who is an OB and she was (1) SHOCKED that the doctor did that and (2) said that fortunately the chances of birth defects were less than 1%.


Wife to DH for 16 years, Mom to 4 girls (15, 13, 12 and 8 months), 2 boys (10, 7), and (13 wk mc 4/10/11), (13 week mc 12/12/11). (11 wk mc 6/25/14)
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#6 of 18 Old 03-17-2012, 08:05 AM - Thread Starter
 
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I go for another ultrasound on Thursday. So no final decisions will be made until then. I am a geochemist and my husband is a paramedic. Given my scientific training I have turned to the published peer reviewed scientific literature for information regarding cytotec and birth defects. Some studies have found an odds ratio of 95% for birth defects and prenatal cytotec exposure. My husband works with people of all ages with all kinds of birth defects. He does a lot of non-emergency transport such as taking children to various facilities for therapies. He understands (medically) exactly what kind of care children with severe birth defects require. We already have a special needs child with mild to moderate cognitive defects. The therapies provided by the state and the school system are pathetic compared to what is available privately. However insurance does not cover everything and we already have very high out of pocket expenses for this 11 year old child. I also have four other children. It seems unfair to the children we already have to introduce a very high needs individual to the family. Before I went into Geology I worked for UCP and the quality of life available to many of the severely affected individuals is very questionable. As far as suing my doctor, I take responsibility for my medical care. I ultimately am the one who put the medicine in my mouth and swallowed it. I did read about the medication before I took it and made the most informed decision I could have at the time. I thought I was miscarrying. Normally I just let nature take it's course, I home birth, breastfeed and so on. However I had an ectopic pregnancy in 2002 that I thought was a uterine miscarriage and did not seek medical treatment until I was dying. The fallopian tube had already ruptured and I was bleeding internally. So not only did I lose the baby I lost half my fertility as 2/3 of the right tube had to be removed. Another time I miscarried and the bleeding continued for so long that I became anemic and required a D&C. So of course when I started the bleeding this time I went right in, hoping to avoid a repeat of the previous experiences and mistakes were made based on the available information. As far as adoption- there is a waiting list of special needs children in need of a family in my state. These children just sit in foster care. Also I placed a typical child for adoption when I was very young and very poor. I have suffered and had to seek treatment for PTSD as a result of the adoption. I will never do that again. So actually I have 6 children, I just haven't seen one of my daughters in 13 years. Sorry for the ramble. I am just letting the thoughts flow. I actually keep wishing I would just miscarry the other twin naturally so I don't have to make a decision. My husband and I have already discussed TTC again in August if we terminate. I kind of have this philosophy that we are not our bodies. Our bodies are just physical manifestations of our life energy. The baby is not really lost. He/She will find his/her way home to us. When I lost my ectopic baby I was pregnant 6 weeks later with my now 8 year old daughter. I have always felt that she was trying to come home and just took a wrong turn which resulted in the ectopic but she got it right on the next try. If this little one is meant to be with our family (or little ones since it is twins) they will find the way eventually. Sounds silly to some people probably but it's what works for me. Sorry to go on and on. I am just dumping all my thoughts unedited as they come. Just trying to process . . .


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#7 of 18 Old 03-18-2012, 06:48 AM
 
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Pattimomma-  I'm so very very sorry that this decision has been laid in your lap like this. I just wish you courage, peace, love and support in this awful nightmare.  You are the only one that truly and deeply knows your circumstances and your heart.  You don't need to justify this choice to ANYONE, whatever you decide.  Again, I'm so sorry.  ((hugs))


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#8 of 18 Old 03-18-2012, 05:29 PM
 
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What, what a decision.  Make the best decision for you and your family and go from there and strong.

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#9 of 18 Old 03-22-2012, 11:34 AM - Thread Starter
 
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I went to the doctor today. We (my doc, husband and I) have decided to move forward with the D&C. I consulted several specialists and they all had the same response- These are very serious birth defects. Surgery is scheduled for tomorrow. This has been one of the hardest decisions I have had to make. I know a lot of people may not agree with my choice but it is what is the best for my family. I hope I will still be welcome to grieve and commiserate here even though my loss story is quite different from most on this board. We will start TTC after August and I feel like I don't fit in anywhere.


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#10 of 18 Old 03-22-2012, 12:11 PM
 
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I'm so so sorry pattimomma.  hug2.gif


S (35yo) wife to T (36yo) and mamma to my princess M (5/10/10).  After 3 losses in 2012, found an AMAZING doctor and gave birth to baby sister S on 11/12/13.
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#11 of 18 Old 03-22-2012, 04:12 PM
 
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You are definitely still welcome to grieve and commiserate here.  You're the only one who can decide what is best for your family, and you've had to face a decision that no one should ever have to face.  I'm so sorry for both of your losses.


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#12 of 18 Old 03-28-2012, 03:42 PM
 
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pattimama, I'm so sorry for you loss. I can't imagine having to make the choices you are faced with. Please feel welcome to come back to this site to grieve, process, and when you are TTC again. xoxoxo


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#13 of 18 Old 03-30-2012, 02:59 PM
 
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Praying for you during this time. So sorry for your loss.


Kristin- Wife to J, Mommy to B (11), M-S (8), and little J (4) and J&J (7 months)
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#14 of 18 Old 04-12-2012, 07:05 AM
 
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I am so very very sorry this has happened to you. I hope you are able to have peace and healing for you and your family. 


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#15 of 18 Old 04-12-2012, 07:16 AM
 
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Oh my goodness, what a nightmare. My heart goes out to you. I'm so sorry for your losses. Take care of yourself during this difficult time.


SAHM to 6.5yo DS and 4yo DD. PCOS with two early m/cs. Married 8 yrs. Certified birth doula, writer, editor.

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#16 of 18 Old 04-12-2012, 12:34 PM - Thread Starter
 
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Thanks Everyone. I am glad this board is here because I really have no one to talk to. My husband keeps pushing me to sue my doctor and he is mad at me for not wanting to pursue that avenue. I really don't want to go to court and have to defend and explain every detail although it's possible that it may never get that far and he would just settle. I have had to chase down my ex for child support and dealt with nasty custody issues. I have been in and out of court for years and I just don't know if I could handle that right now. Is anyone on here an attorney? any suggestions on the medical malpractice portion of this?


~Patti~ rainbow1284.gifMomma to three girls and three boys chicken3.gif, First mother to one girl triadadopt.jpg

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#17 of 18 Old 04-13-2012, 02:59 PM
 
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I'm not an attorney but I think it's wise to consult one. This sounds like a really clear case of malpractice to me. Unless there is something I don't know, I can't even imagine how the doctor could defend his actions so settling would be highly likely. Talking to an attorney doesn't mean you have to sue. Just have a consult and make an informed decision from there. 

Again, I wish you healing and hope during this difficult time.


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#18 of 18 Old 05-22-2012, 10:18 AM
 
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I'm sorry you are going through this.  It is important that you have made a decision you can stand behind, and your philosophy on life sounds like one that provides good guidance.  Litigation is a hard process to go through.  It is worth considering what your goals are.  I am not a lawyer- but my understanding is- Litigation will provide financial compensation.  It would not be in criminal court- it is not about determining if a crime was committed if you initiate a lawsuit- it is a civil case.  But you can also take the step to report the actions to your state medical board and to the hospital medical board, which may achieve your goals better- if your goal is to make sure that the OB is held accountable for the mistake and it does not happen again to someone else.  Anger and blame are a normal and I would say improtant part of the grieving process but are not the answer for moving through the process. 

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