Molar and Partial Molar Pregnancy Support Group

[Mummy2Corban]

thanks for the update Sarah! Yay! So pleased to hear that! Xxx

 

[Bentleesmommy]

Hi! I am new here! I have been looking for a support group with no luck. So, here is my story.
My DH and I found out we were expecting baby #2 in July of 2011. My son was only 4 months old at that point. I felt like something was wrong, but didn't want to admit it. I had an ultrasound on August 10th at 6 weeks. I seen the heartbeat and everything! They scheduled my next appointment on September 26th(the day after our anniversary) for my 12 week ultrasound. My DH was sick that day, so I was in the room by myself. I automatically knew something was wrong when the ultrasound was started. I asked the tech was the baby in there. She said yes, but it has not grown. My baby had died 4 days after the first ultrasound. I was devastated..
My two week follow-up was when I learned that I had a Partial Molar Pregnancy. Once again, I was alone!! I had never in my life heard of this. But, my levels were already down to 13. My doctor tried to explain everything, but she didn't know much about it herself. She has been very caring though.
I have finally been told that I don't have to go every week to check my levels, I now go once a month!! I want another baby sooo bad, but DH is scared to even try again for a long time..

Sorry if I left anything out or confused anyone!

 

[Mummy2Corban]

hey there, Im so sorry to hear your going through this but so very glad you found us. There are ladies on here at all different stages. A few recently had rainbow babies one pregnant with twins and some of us at similar stages as you. For me i had a complete mole which Ive had to have chemo for (its the low dose so Ive not lost my hair) Im now on my last week of treatment so Im happy. It is a scary thought to try again but its a chance we all have to take to get our rainbows. Its not likely to happen again only a small percentage. Have you been given the all clear to try again yet? Xx

 

[Alwilan]

Hi everyone, sorry its been so long. Things didn't look too great a month ago, but i didn't want to post moaning etc, when i know how desperate you all are for your rainbow babies, and then i saw homegrowns post about a twin molar and thought I'd be the last person she'd want to hear from. I see she hasn't posted again, but I hope things are getting easier.

Kate, massive congratulations can't wait for a proper update and to see pictures. So very happy for you.

Mummy2corban, glad things are still going in the right direction. Roll on 2012. 2011 has been a rubbish year for so many of us.
Tung and blakesmom I'm sure those levels will be under 5 soon. Tung I wondered if i could put myself through this again, but so glad i did.
Rachieroo, sorry you had another false alarm, sure it wont be long.

Bentleesmommy welcome. I only joined this board when i found out i was pregnant after my complete molar. I have found it so helpful to meet people who understand your emotions, because i think only those who have been through it can fully understand. I hope you find the support you need here. It's such a shame there are so many of us.

I have been thinking about my molar alot recently, as it was this time last year i found out i was pregnant. Although i was told the pregnancy wasn't viable on the 30th dec. It wasn't until january a complete mole was diagnosed and i had my d&c. The girls will defo be here by the 20th jan and its an odd feeling, I'm about to give birth a year after my life fell apart. As said early hopefully 2012 will be filled with good news for lots of us.

Love to everyone, and sorry i went awol for so long.

 

[Mummy2Corban]

Alwilan - I did wonder if everything was ok as you hadnt posted for a bit. Is all ok now? I hope so. Cant believe your girls will be here soon! You must be getting big now Im so pleased to hear from you!

Im so glad to be finishing chemo this week will well and truly happy i can start the new year with the chemo side behind me. We have decided for a 6 month wait which takes us to June (we started trying may/june this year) so that might feel strange but i look forward to it with the slight feeling of being scared but...... i just keep the image of holding my rainbow (im convinced it will be a girl but i dont know if thats wishful thinking???)

How is everyone else?

xxx

 

[rachieroo]

Congratulations jamaris mummy so pleased!
mummy2corban yay for almost finishing treatment!

Bentleesmummy sorry for what you are going through! I too was diagnosed with pmp in july. I have been monitored monthly too, just urine samples and I have two samples until my followup finishes! My DH was also terrified about ttc again, we are allowed to start in jan and it wasnt until the end of September that he finally told me he was ready to try again in Jan! Give him time, dont force it, he meeds to heal too, and he probably doesn't want to see you go through this again, i hope you can find some comfort from this group i did! Xxx

 

[Mummy2Corban]

2 more samples! Yay! Not long now rachieroo! Fingers crossed for ttc!!! xxx

 

[Micahsmommy12]

Hello All,
I am very new to this forum and i haven't had a chance to scan ALL the comments but so far i dont see anything exactly like my situation. But i am hopeful someone can relate or give me some advice.

Here is my story. I am 39 years old and found out i was pregnant back in July. I had an early ultrasound at 5 weeks and i was told there were two sacs! This was overwhelming for me because my fiance and i already have five children between us. We absorbed the idea and got excited about having twins in the house. At my 9 week appointment, the u/s showed two sacs but only one fetus with a heartbeat! We were sad! They explained i had "vanishing twin syndrome" and the empty sac would eventually vanish!

Because of my age, i have ultrasounds every two weeks. As time went on Micah continued to develop nicely, and the other sac continued to get smaller and smaller. I never had an severe nausea, spotting or anything unusual. At my 20 week, u/s it was discovered i have placental veneous lakes and they didnt appear to be any cause for concern to be the SAFE i was referred to a maternal fetal specialist.

The first visit to the specialist was somewhat overwhelming! the Dr. had ZERO bedside manner and he was seeking a diagnosis! he told me my placental looked funky and he was concerned my baby was tripilody. and he wanted to check my HCG levels and do an amnio. I refused the amnio but agreed to the level check. he said my levels should be around 80,000. Well of course we were devastaed, but remained prayful and did our research. I learned if the baby was tripliody, it would have growth restrictions, fluid, etc. Micah measured perfect to the day. On the next visit, the Dr agreed with me.. he said, the baby was probably NOT tripliody, BUT my levels were elevated. They were 89k, instead of his estimate of 80k. So then he introduced the partial molar theory.

To date i am 25 weeks pregnant, with the last check my hcg leves were 103,000. The Dr said they should be down to 20,000. From my research, level ranges are so WIDE depending on the woman. So how does the Dr know what my levels should be at this time??? Micah is developing perfectly, but my placenta still LOOKS funky. To me it looks like the other sac, from the lost twin, implanted itself into my placenta. I have another ultrasound tomorrow.

But i am SOOOO CONFUSED.. i have read partial and molar HCG levels are through the roof. More like 300k- and up.. I have also read its VERY RARE to have a partial molar and a viable fetus.

We want to ENJOY this pregnancy because this the only baby we will will TOGETHER.. but we cant due to worrying about pmp, gtd, and all those terrible things the doctor has told us.

Please note, i have two girls. I had placental issues with both and they were both early. but no one ever mentioned or suggested molar in the past.

SORRY FOR THE BOOK.. CAN ANYONE SHED ANY LIGHT ON THIS?????

 

[Micahsmommy12]

BTW, God Bless you all for this forum and for the things you have been through.
I am prayful everyone will have a happy outcome and if not, will find peace with their outcome.

 

[Alwilan]

Michasmommy, you are coping so well, with everything you have been through. During my time on this board i have seen nothing similar. A post was made a month ago from homegrown she had 2 sacs, but this was only discovered after d&c. When i had my complete mole, i remember reading a couple of stories about a baby being born aswell as losing twin as a pmp, so it is obviously possible. As for the ins and outs of your hcg levels, i don't have a clue, sorry. Other than the disgusting bedside manner, which i can fully sympathise with your doctor sounds on top of things. The only other suggestion i could offer, is that your case sounds so complex and rare, that i think after making a few calls you could have several doctors wanting to examine you and understand and maybe shed some more light.

Thinking of you x you must have been on the biggest emotional rollercoaster x and wishing you and Micah all the strength in the world. Please update with results of tomorrows scan x

 

[AmandaLucsMom]

Hi ladies! I am so, so sorry that I havent posted in such a very long time! I had tried to catch up several times, but just keep getting behind. Its been a very crazy almost three months. Life with a newborn pf course is, but Noah is a very demanding baby so far. He is still getting up at least twice, if not four times a night and wants to eat almost nonstop. He isnt fond of any of the baby gear, such as swing bouncy seat and so on. He also has a lot of gas issues, maybe a touch od colic. I am so very grateful to have my beautiful rainbow baby, but its been a trying time. I'll include a couple of pictures.

I see we have several new members, welcome to you all. I'm so glad you have found us and so very sorry for your losses. Michasmommy, I pray your baby is ok. I think its a very positive thing that growth has been on track. I've only heard pf one case of twin, one pm pregnancy. I believe the surviving twin was the healthy one. Sorry, not much help here.

Alwain, good to see that your girls are doing well! How long will they let you go? How are you feeling? I've known several twin mommies go to term. I hope you do!

rachieroo, wow, almost there! So exciting!

Mummy2Corbin, hooray for being done with chemo this week! I'm so glad you get to start out the year on a fresh foot and the next 6 months will go by so quickly!

I'm going to go try to catch up more, I promise not to allow so much time to pass by again! I miss you all!

 

[AmandaLucsMom]

Sorry, pics didnt post!

 

[B&LsMom]

Hi! I am new here! I have been looking for a support group with no luck. So, here is my story.
My DH and I found out we were expecting baby #2 in July of 2011. My son was only 4 months old at that point. I felt like something was wrong, but didn't want to admit it. I had an ultrasound on August 10th at 6 weeks. I seen the heartbeat and everything! They scheduled my next appointment on September 26th(the day after our anniversary) for my 12 week ultrasound. My DH was sick that day, so I was in the room by myself. I automatically knew something was wrong when the ultrasound was started. I asked the tech was the baby in there. She said yes, but it has not grown. My baby had died 4 days after the first ultrasound. I was devastated..
My two week follow-up was when I learned that I had a Partial Molar Pregnancy. Once again, I was alone!! I had never in my life heard of this. But, my levels were already down to 13. My doctor tried to explain everything, but she didn't know much about it herself. She has been very caring though.
I have finally been told that I don't have to go every week to check my levels, I now go once a month!! I want another baby sooo bad, but DH is scared to even try again for a long time..

Sorry if I left anything out or confused anyone!

We sound like we were going thru things around the same time. I got my BFP on July 24th--heard a heart beat at my first prenatal appointment on Sept. 2nd @ 9weeks 6days, and then at our ultrasound appointment on Sept 16th it was discovered my angel had grown wings 1 week before 10weeks and 6days. D&C was on Sept 21st but I have still yet to reach "negative" hcg levels. my last blood draw was Nov. 28th and I was @ 7. Hopefully DH comes around soon for you--since levels dropped so quickly your body should be ready in no time @ all to carry a wonderful little one to term!!

 

[Mummy2Corban]

Hi ladies! I am so, so sorry that I havent posted in such a very long time! I had tried to catch up several times, but just keep getting behind. Its been a very crazy almost three months. Life with a newborn pf course is, but Noah is a very demanding baby so far. He is still getting up at least twice, if not four times a night and wants to eat almost nonstop. He isnt fond of any of the baby gear, such as swing bouncy seat and so on. He also has a lot of gas issues, maybe a touch od colic. I am so very grateful to have my beautiful rainbow baby, but its been a trying time. I'll include a couple of pictures.

I see we have several new members, welcome to you all. I'm so glad you have found us and so very sorry for your losses. Michasmommy, I pray your baby is ok. I think its a very positive thing that growth has been on track. I've only heard pf one case of twin, one pm pregnancy. I believe the surviving twin was the healthy one. Sorry, not much help here.

Alwain, good to see that your girls are doing well! How long will they let you go? How are you feeling? I've known several twin mommies go to term. I hope you do!

rachieroo, wow, almost there! So exciting!

Mummy2Corbin, hooray for being done with chemo this week! I'm so glad you get to start out the year on a fresh foot and the next 6 months will go by so quickly!

I'm going to go try to catch up more, I promise not to allow so much time to pass by again! I miss you all!

Corban also wanted feeding constantly! He fed loads and also wanted feeding a few times a night. Thats hard work on nits own!! He looks absolutly gorgeous! Proper cute

 

[Mummy2Corban]

Micahsmommy - Im sorry you are going through this and that some of your doctors have been less than helpful. I dont really know much about what your experiencing even though ive briefly seen another ladies stories about a twin molar (think thats what she called it) How did your scan go? Did they help in anyway? Thinking of you and Your baby and we will all be thinking of you all xxx

 

[Jamaris Mummy]

Hi ladies
Just popping in to announce that I had my rainbow baby a little girl. We named her Indigo Raine and she weighs 6 pound 2 and is 47cm long. Very long Hard and arduous labour went for 2 days although active labour was 16 hrs. An epidural, episotomy and stitches later I finally had her at 12:08am on 5/12/2011. She is the most precious thing in so in love with this little joy. I have put photos on Facebook if anyone wants a sticky u can add me full name is Kate Oakley and my profile pic is just a photo of my face (long blonde hair) if that helps lol love to u all hope to post soon xoxo

 

[Micahsmommy12]

Thank you Alwilan and Mummy2Corbin for your kind words and thoughts.

My scan went well today! The placenta still looks weird, but it hasnt gotten any worse and its still supplying Micah with everything he needs. Blood flow, fluid around baby, growth, my pressure, etc.. all look good. God is so awesome!

My doctor said she was prepared to speak with me about administering steriods so that IF Micah had to be delievered early, his lungs would be mature. But after the scan, she decided against because it looks like we have "time"

She also said, this pregnancy doesnt appear to be mimicing GTD (gestational trophoblastic disease), caused my moles. Another victory! But she still has NO IDEA what the mass is in my placenta.. So its a waiting game at this point.

I will get my hcg levels back tomorrow. i am believing they are stable.

 

[Mummy2Corban]

Jamarismommy....CONGRATULATIONS!!!!! SOOOO HAPPY FOR YOU! I soooo love the name indigo! So fitting and soooo beatiful. Ill add you now so i can see your gorgeous new addition. Enjoy xxxxx

 

[Mummy2Corban]

Micahsmommy - im so happy for you! It must be a relief the scan went well and also that they dont think its a mole. Aslong as they are keeping an eye on you both thats great. Hope all stays well and your hcg results are as they should be xxx

 

[Mummy2Corban]

Jamarismommy....i added you...well i hope its you!!! xxx