[Murphy's Law]

Hi All ~

On Friday, we got the results back on our miscarriage from John's Hopkins. They said our baby was a little girl. They also said that we had a partial molar pregnancy. Basically, instead of 46 chromosomes, the baby had 69. What this means is two sperm fertilized my egg. It is a very rare condition in about 1 and 1,000 pregnancies. I was wondering if anyone has ever had or heard of this.

The scary part of this is that we can not try for almost 6 months; and I had to go back on the birth control pill; which I so didn't want to do! The reason for this is because the molar cells stay in the uterus and they can cause cancer. I now have to go for a chest x-ray and some other scans to make sure the cells are not active. It is just crazy.

The doctor referred us to a genetic counselor and we have an appointment with them tomorrow. Hopefully, they will be able to shed some light onto this subject.

I was so looking forward to trying again; but now we are put on hold yet again. They say this type of pregnancy can follow an ectopic (I had one in June). If anyone can help shed some light, I would greatly appreciate it!!!!

[kcmour]

Dawn, I am so sorry this happened. I have heard some about molar pregnancies, but just basically everything you already stated. It's hard to believe that a pregancy has the potential to cause cancer???? It just does not seem fair. Please keep us posted as to what the genetic counseler has to say. My prayers are with you & DH

[Annaandy]

I can not shed any light I am sorry, a few years back I had a baby at 8 months with too many chromosomes also a girl, they told me happened at time of conception so needles to say i did not take a child home and it was also very rare, i still to this day do not understand , I am sorry again for your loss.

[Stormi]

I am sorry to hear about your loss and I understand how hard it is to be told you have to wait that amount of time to start trying again. Wow, I never knew that something like that could potentially cause cancer! I have to say that I am impressed with your doctor though. How thorough they were to do genetic testing and tell you that there could be other complications from this. If you didnt have the testing done to tell you what happened to your baby you may have not known the other things that could have happened. So while I dont have an answer for you, I do understand you being sad and upset over the wait, but you want to make sure you are completely healthy before you try for your precious miracle again Keep your chin up!

[jenedens6102]

Dawn,
Wow is all I can say. What a situation this could put you guys in. First it'll be longer before you can start trying and it opens up a door for further testing. How are you guys handling the news? Have you decided to name your little one or anything? My thoughts are with you.

[Murphy's Law]

Thanks for your replies ladies~

Jen~ to answer your question, I think we are still in shock from all of this. When the doctor said we would have to wait 6 months to a year before we could try again, I was just so hurt. The thing that got me through my miscarriage was that we could try again. My RE thinks that this goes back to an egg quality issue; because a normal egg would not have allowed two sperm to fertilize it. I'm anxious to speak with the genetics counselor and see what they have to say. Then I have to go get scanned to make sure the left over molar cells are not growing; etc.. That is the crazy part.

Yes, we are going to name her. I'm not sure what yet. I had a name picked out; but I'm just not sure. We bought some tulips to plant in our garden in memory of her.

[jnem]

Well I hadn't heard that term before but we had some experience with genetic counceling. DH had cromo test before we TTC becasue his brother was born missing his 22nd cromisone (sp?). Our counselor said that the 23rd and 22nd were stuck together so the 22nd had no info and the 23rd had too much info. His brother survived and is now in his 20's, he is very seriously mentally and physically challenged.

Jen

[jenedens6102]

That sounds like a beautiful way to pay tribute to your baby girl. I've heard many times where people have planted a garden or a tree in memory of their child. Some even get a garden stone. I love all those ideas, the baby may be gone but she's never forgotten. I do hope that the time flies for you so that you can get back in the game. I know that a couple months is enough to drive someone crazy let alone 6 months to a year. If you need anything, just let me know!

[anirtak]

I am sorry for your loss and am sorry that you have to wait 6 months to a year. DH and I have been putting TTC on hold for almost 6 months due to a miscarriage, starting to see our RE and now thyroid problems. So although we are in different boats as for the reason for putting a hold on TTC I know how you feel. It is frustrating when you have to put on hold something that you want so badly.

As far as a molar pregnancy, I do not know much about it. I first heard of it from reading the Book Waiting for Daisy. The author of the book also had a molar pregnancy. know that you are in prayers.

[Dona]

Dawn - OH sweetie, I am so, so very sorry to hear this news. Please know that I keep you, DH and your little girl angel in my prayers. The thought of having to wait 6 more months is dreadful, I know and I'm just so very sorry.

I came to the board today to post a question about molar pregnancy and I saw your post and really could just not believe my eyes. I do NOT want to take over or steal your post, but since I saw you posted about a subject I was coming to ask about, I might just put down in this post what I just heard from my OB, hope this is OK? Maybe we can get some more input this way.

MY OB just called and she had the preliminary pathology report on the tissue that was removed after my SECOND D & C (I started bleeding heavily and had severe pain, one week after the D & C to remove our deceased baby, so I had a second D & C and more tissue was removed and sent for testing). She told me that viable cells were present and that testing could be done. The report stated that some of the cells looked "funny" and that the remaining tissue would be sent for further testing. She then said to me she was going to quote from the report that "although highly doubtful, the possibility of a molar pregnancy needs to be ruled out". So, this is what the report said. I asked about what a molar was, etc. and she was explaining it but I wasn't understanding. She told me it is highly treatable and that IF it was molar, then hcg levels must be tested until they are at zero. She also said it could mean waiting six months to try to conceive again, but this was only IF it was molar. She mentioned the "cancer" side of it, but I still do not understand if cancer cells cause a molar or if a molar causes cancer???? I'm really in the dark about it. But, she did say the cancer that can be found after a molar is called something like "gestational tripleblastomic disease"? I'm not sure I got it right, I was scribbling it all down very fast.

What I don't understand is that the information I found on a molar pregnancy says that instead of a fetus, just a mass of tissue will form and grow. Well, we for sure saw a heartbeat on the first ultrasound and the 2nd ultrasound, although no heartbeat was present, definitely showed the form of a tiny fetus, complete with arm and leg buds and a very visible head. So, that gives me a shot of hope that my issue is not a molar, or could I have had a normally developing fetus AND a molar at the same time?????? I just don't know, I wish I could have thought quick enough to ask my OB all this stuff! But, it was only after I hung up that all the questions came to me.

Can anybody else shed some light for Dawn and I? We'd appreciate it, I know!!

[pjorenstein]

Hi, I'm the author of the book mentioned above (Waiting for Daisy) and was lurking around this site when i saw your post on partial molar pg. I can tell you a little about it, having had one.

It's different than a full molar pg for one thing. A full molar forms when a sperm fertilizes an empty egg. There is never a fetus, just bits of placental tissue. In a partial molar pregnancy, two sperm or a double-headed sperm fertilize an egg (I said my husband's sperm had gotten impatient and got aggressive). Instead of forming twins, something goes wrong and although there is a fetus, it is chromosomally abnormal and cannot survive.

Okay. I warn you: this part is creepy but it is so much less of a risk for a partial molar pg that it's almost hyper-caution of the drs. to worry about it. The issue with molar pregnancies is that cells left behind after the D&C can grow independently and then need to be treated with a form of chemotherapy (don't freak out--this is so unlikely to happen, and anyway you didn't have a full molar pregnancy so keep reading and don't be scared). It's a very low-dose chemo that doesn't cause hair loss or nausea. So how likely is this to happen? NOT VERY. In a FULL molar pg it's about a 1 in 5 chance. In a partial molar? No one really knows, but the chances are FAR FAR FAR lower. But understandably, that is horrible, depressing news that a person takes hard. (I'd also been treated for breast cancer a few years earlier so I felt my body was really out to get me). How could you not be totally devastated?

The reason they won't let you get pg again is that the way the dr. tells that things have gone the wrong way is by taking your blood every week (and progressively less often) for a period of time. If your HCG goes up and you're not pg they know something is wrong. If you did get pg they wouldn't be able to tell if the HCG was up because of the molar or because of the new pregnancy, and it would be dangerous to the new pregnancy if you had a recurrence of the molar while you were pg again.

So how long do you wait? Wiht a FULL MOLAR they say a year. With a partial they really don't know. My dr. said a year was WAY too conservative, though. She recommended six months. That was devastating news to me as I'm sure it is for you. just awful. And I'm so sorry you hvae to go through it. But YOU WILL GET THROUGH IT. And you should ask your ob to get you whatever documentation she can about the REAL risk to you vs. going ahead earlier and TTC. Then you can way the costs and benefits.

Finally, on the issue of having a whole new molar pg: super, super rare. Like less than one percent. Especially with a partial molar. A partial molar is SO MUCH LESS SERIOUS. Please remember that. So with all you will inevitably worry about? Don't tear yourself up about that one. It's just so unlikely.

It took us six years and lots of loss and stress and strain to our relationship etc. etc. to have our daughter, who is now 3 1/2. I empathize with everything every single one of you has gone through and is going through. I wrote the book hoping it would be a friend and companion to women going thorugh this, that it would be inspiring and remind you that YOU AREN'T CRAZY and also provide a few laughs along the way...I also thought it might be something you could hand to friends & family who don't get it. If they read this? They'll get it, I promise.

Feel free to check out my web site and email me with any questions.

Best of luck to all of you.

--Peggy Orenstein
peggy orenstein

[Murphy's Law]

Wow! Thanks Peggy! I really appreciate all of that useful information!

Dona~

I knew when I read your previus post, it was like reading my own. I know it is horrible to say; but I'm glad I'm not alone in this.

We had an appoitment with the genetics counselor yesterday. She said basically what Peggy said. We had a partial molar pregnancy. Two of DH's sperm fertilized one egg, giving our little girl three sets of chromosomes. One from me and two from DH. Everything else, chormosomally speaking was normal. She also said the chances of this occuring again were less than 1%. That put my mind at ease. The other question for us is, does this relate to egg quality? The doctors are just now starting to "guess" that I might have diminished ovarian reserve. However, I have never had the formalized testing of FSH levels at day 3 or the clomid challange test. DH and I are going to meet with our RE today at 1:00. I'm going to ask if I can have one of those test to know for sure. We will also go over all the results of the tests and discuss what the genetics counselor had to say.

Dona~ How are you doing? What did your RE recommend? You and DH are in my thoughts and prayers!!!

[Dona]

Peggy ~ I just wanted to post a big THANK YOU for coming and posting your information for us, it really and truly helped me get rid of some of the worry I've carried since yesterday morning. I didn't eat or sleep yesterday, just nervous about what my OB said and wondering what my chances were of a molar, since we KNEW the pregnancy we lost was an actual fetus.

Dawn ~ I'm doing OK now. I'm still a bit nervous, but I know I must wait for the further testing to be done, then go from there. Of course, I am hoping and praying that the tissue removed at my second D & C was just leftover (missed) from the first D & C and nothing more. I pray I'm fine and can TTC in 2 months. I am not dealing with my RE since he had released me to my OB after my 1st normal ultrasound. It was at my first visit to the OB that we found our baby no longer had a heartbeat and so she performed both D & C's and gave me my surgery follow up on Monday. So, I am just going with her now. She has said we now we wait for the results of the "further" testing, but she did say how rare molar is, especially the full molar and I did not have any symptoms of the molar, during my 10.5 weeks of pregnancy, so that is a good thing. The wording from the preliminary pathology eport both worried me and made me feel hopeful. It was the "funny" looking cells part that worried me, but it was the "highly doubtful" that it was a molar pregnancy, that gave me hope it was not. Now my mind just thinks about the "funny cells" and wonders if these could be the result of chromosomal abnormalities and that's why I have funny looking cells in that tissue sample to begin with????

At first, my RE thought I had diminished ovarian reserve, but I did do the FSH and Clomid Challenge Test (C3T) and something called "EFORT" and it all confirmed I had premature ovarian failure, which they tell me means my ovaries function like that of a 40-45 year old, my egg quality isn't great. But, with Menopur and our first IUI, I did get pregnant, so we are hopeful we can again, and with a good quality egg, if this was the problem last time. I'm considering genetic counseling, even though I have no clue what it is, just think perhaps it might be a good idea due to my diagnosis and miscarriage.

Hang in there Dawn and please know that I am thinking about you and keeping your family in my prayers!! We are women, hear us roar, we will rise above!!!!

[pjorenstein]

I'm so glad I could be of use to you guys--it's nice to be able to put all the knowledge I wish I'd never had to have to use in a positive way! I wish you luck, strength, hope and courage....

--Peggy