Molar and Partial Molar Pregnancy Support Group

Its actually quite a beautiful sentiment...

"Rainbow Babies" is the understanding that the beauty of a rainbow does not negate the ravages of the storm. When a rainbow appears, it doesn't mean the storm never happened or that the family is not still dealing with its aftermath. What it means is that something beautiful and full of light has appeared in the midst of the darkness and clouds. Storm clouds may still hover but the rainbow provides a counterbalance of color, energy and hope.

Basically, a rainbow baby is the baby carried and born after a loss.
 
Amanda that's a lovely way to explain it :hugs:

MissKane are you in the UK? I hope you get somewhere with the specialists :hugs: If you are in the UK and are thinking of going private it might be worth looking at Zita West - she has a clinic in London. I made my o h agree that if I wasn't pregnant by my birthday in October I could have a consultation as my birthday pressie :haha: I found out I was pregnant in the August in the end but I got a lot of info from her books :thumbup:
 
Christine I cannot even imagine what its like going through a second pmp, and you sound like such a lovely lady, its times like these i dont understand why bad things happen to good people!:hugs: I just wanted to say hold onto hope, and never give up on your quest to have your own little one, your rainbow baby could be closer to being in your arms then you realise:hugs: Amanda thanks for the explanation of a rainbow baby, the quote you used I have in my diary that I keep after losing Jamari, that has now turned into pages of me talking to him about this baby. Its such a catch 22, some days all i think about is him and feel guilty for not thinking more about this pregnancy, this baby, other times when I think about this baby I feel guilty about Jamari. Ive been driving myself crazy in my mind with this, and have just settled with the idea that an angel baby is helping to guide this rainbow baby, the two are siblings and i love them both just as much so need to stop being so hard on myself...god knows we have all had enough hard times already.
Love to each and every one of you ladies, you are all survivors, mothers, and strong amazing women. I feel so lucky to have found you all it makes me realise just how strong we can all be when we least expect to have to be!:hugs:
 
how long did you ladies have to wait to know if you had a partial or complete mole? And how soon after did you find out about your hcg levels? They told me they never thought there was a baby :( the ultrasound lady even asked if id had a positive pregnancy test! I feel a little lost as now my pregnancy is over :( and the chance of trying again has been taken out of my hands. Im sorry to moan on but it just help to get it out. Thank you xx
 
Hey ladies, hope you dont mind me popping in! thanks to mummy2corban i found this thread :)
I had a scan at 12 weeks and the found a sac measuring 7 weeks but no baby, a week later they did anohter scan to double check that my dates werent wrong, and it was then they seen 'something' on the scan. They didnt know what it was and told me their only explanation was partial molar pregnancy.
I had a d&c and the tissue was sent for testing. I had a blood test the same day as my second scan to check hcg levels, but have had nothing since. They dont know if it was partial molar or normal mmc, and i have been told nothing!! I tried ringing my ob/gynae and was told that they couldnt tell me the results as they have been sent to London for further testing and a second opinion.
Has anyone else been through a similar situation, i just want to know if this much contact with the hospital is normal??
Sorry to all of you that have been throught this awful experience and congratulations to those that are expecting again and have their precious rainbow babies! xx
 
Amanda, thank you for the beautiful explantation of rainbow baby, it brought tears to my eyes. I am located in the US, but i'm hoping I find the right doctors this time around with a combination of alternative medicine. Jamaris Mummy, i admire you so much for your strength, everyone here displays a tremendous amount of strength, my heart broke when i read your story and smiled to know that you will be having a rainbow baby.
rachieroo, so sorry for your loss, the first time around i waited, approx. 8 months, it was till my levels went to zero and then three weeks of zeros in a row followed by six months. This time, i am going to see what the specialists have to say, im not at zero yet, but i defitnely cant do it for a little while, but i'm hoping not to wait as long. The irony of this whole thing is my due dates were nearly the same one year apart. Jan 29, 2011 and jan 30, 2012. I have my two angels now looking after me, i beleive once you have a heart beat you have a soul...

i am trying to be positive as best as i can, i spent days just crying all day long-and sometimes i'll be okay and have a breakdown but its okay...i learned you have to express yourself however you need..and just know that things will happen --One thing i will stress is that if you dont feel like your doctors are giving you the compassion and treatment that you need ...LEAVE....i truly feel that emotionally effects your pregnancy two especially after going through something as seemingly rare as a molar pregnancy or any miscarriage your going to naturally have anxiety and you need drs. that will understand that and comfort you at the same time giving you medical advise. ...

sorry if i'm babbling on.....

prayers to all ..
 
Amanda that's a lovely way to explain it :hugs:

MissKane are you in the UK? I hope you get somewhere with the specialists :hugs: If you are in the UK and are thinking of going private it might be worth looking at Zita West - she has a clinic in London. I made my o h agree that if I wasn't pregnant by my birthday in October I could have a consultation as my birthday pressie :haha: I found out I was pregnant in the August in the end but I got a lot of info from her books :thumbup:


Since i'm in the US maybe i'll see if any of her books are on amazon. thanks a bunch.
 
Sarah, I wish I could take credit for the beautiful explanationof what a rainbow baby is, but I found it on babycenter.com. It is perfect though, dont you think? How is little Oliver doing these days?

Kate, I agree with you that an angel baby is with us and its siblings always. You will always hold Jamari in your heart and dont you ever feel guilty for keeping him in there. I think its perfect for you to keep his memory alive so you can share it with his sibling. How could your current pregnancy no make you think about the what ifs and where you would be had you not lost Jamari. I dont think at all that it is not fair to the baby you are carrying. We can all see how much you love and have bonded with this baby and you will have a life time to devote attention to him or her while keeping Jamaris memory alive.

By the way, I see his birthday is approaching. I'm quite sure this is intensifying some of the anxiety you are feeling. Most of the women on my Sept 2011 RB board, including myself, have gone through that day and it seems very normal to have a lot of anxiety build up as the day approaches, but that the actualy anniversary of the loss is a more calming day of remembrance. I hope you find peace in celebrating the short time you had carrying Jamari and knowing that he still lives on in your heart. I hope I am not upsetting you by bringing it up.

Mummy2Corbin, you can find my story on pg 17. My loss was very early and after researching following my first appt I was convinced I had suffered a blighted ovum and a baby never existed. Alas, that was not the case and I find it extremley frustrating when people who dont understand what you are going through try to retionalize that all is for the best and there was likely never a baby with a HB in there. I always feel as if they are belittling my loss and heartache. I try to remember they have good intentions, but please dont act as if anyone is better off because I certainly wasnt any better off that way. After time to heal some and reading through the stories of others I came to realize that I had what I like to refer to as a "best of the worst case scenario" in the fact that I was only blissfully ignorant for 9 weeks and not half of a full term pregnancy or longer. Some women (ones here and elsewhere) have had to make heartbreaking decisions regarding their babies after months of seeing heartbeats and feeling them living inside their wombs.

I understand how lost and confused you feel. How the hell does this happen to us? Why the hell does this happen to us? Just know you did nothing wrong and there is no reason to think you will not go on to be pregnant again and fill you heart with another baby. Yes, somethings will never be the same, but you will survive and things will get better. No one here will ever think you are moaning. This group exists because it is known that talking about it, especially with others who have walked in your shoes, helps you to get past the confused, lost feelings and we would all love to help you find your way.

rachieroo, I am so very sorry for your loss and for the very frustrating situation you currently find yourself in. I would be so angry and just wanting answers. How the hell do they tell you they CANT give you your results. I understand they are not finished with their findings, but just say so then. Just say we aren't sure yet and need to further investigate rather than leaving you worry about it. Grr, it makes me so angry. I'm sorry that I cant offer any advice on time and such as I am in the US and as you know our healthcare system is very different and the route we take is different. And dont even get me started on how flawed it is here! Anyway, I pray you get some results very soon. My situation was similar as nothing was seen upon first scan and suspecting I had been wrong on dates went back a (grueling, anxiety ridden) week later to find we saw "something". Another week later and that "something" had grown, but clearly by that point we should be seeing a heartbeat and i just couldnt take it any longer. Thank goodness I opted for a D&C or I wouldnt have known. Then again, I wonder how many people opt for a natural miscarriage, never find out they had a pmp and are never told to wait so they dont and they have full term, healthy babies. I guess we'll never know. BTW, what a gorgeous baby in your profile pic. She made me smile just looking at her, so I imagine she is what is getting you through this. I know my son was what got me through my loss. Good luck to you and Happy Birthday very soon to her!

MissKane, you're welcome for the explanation. As I said above, I wish I could have verbalized it so eloquently as it is perfect. I have no idea who originally penned it, but it is beautiful and captures exactly how I feel and I imagine every woman who has lost a baby feels.

I agree with you, Jamaris Mummy is one of the strongest people I have ever met, virtually or in person. She embodies courage and strength far, far beyond her years and her attitude is truly inspirational. I feel very lucky to have met her and every woman on this board and wish I had found them sooner. It would have been so much easier to endure the first few months with their support.

I think you also have a very healthy attitude about how to deal with your feelings. You absolutely should allow yourself to feel badly for yourself and cry whenever you need to cry. You must get it out or it will eat you up. I pray you find the proper experts to help you in your situation to figure things out and put you on the path to a complete family. You deserve it just as much as the next person. Big hugs to you and I cant wait for the day that you return to tell us that you are pregnant, the day you have your anatomy ultrasound and that everything looks great and ultimately the day you come to announce you have given birth. You have to be positive that it WILL happen for you, I know it will!

Love to all you wonderful ladies! We are all very, very strong women!
 
Thank you Amanda, i also think she is gorgeous, but then im her mum so i am biased :)
Yes it is very frustrating at the moment, i just want to know either way!! I am so glad that i have found you ladies , it is comforting to know that others have been through similar situations and come through the other side! x
 
Sarah, I wish I could take credit for the beautiful explanationof what a rainbow baby is, but I found it on babycenter.com. It is perfect though, dont you think? How is little Oliver doing these days?

Kate, I agree with you that an angel baby is with us and its siblings always. You will always hold Jamari in your heart and dont you ever feel guilty for keeping him in there. I think its perfect for you to keep his memory alive so you can share it with his sibling. How could your current pregnancy no make you think about the what ifs and where you would be had you not lost Jamari. I dont think at all that it is not fair to the baby you are carrying. We can all see how much you love and have bonded with this baby and you will have a life time to devote attention to him or her while keeping Jamaris memory alive.

By the way, I see his birthday is approaching. I'm quite sure this is intensifying some of the anxiety you are feeling. Most of the women on my Sept 2011 RB board, including myself, have gone through that day and it seems very normal to have a lot of anxiety build up as the day approaches, but that the actualy anniversary of the loss is a more calming day of remembrance. I hope you find peace in celebrating the short time you had carrying Jamari and knowing that he still lives on in your heart. I hope I am not upsetting you by bringing it up.

Mummy2Corbin, you can find my story on pg 17. My loss was very early and after researching following my first appt I was convinced I had suffered a blighted ovum and a baby never existed. Alas, that was not the case and I find it extremley frustrating when people who dont understand what you are going through try to retionalize that all is for the best and there was likely never a baby with a HB in there. I always feel as if they are belittling my loss and heartache. I try to remember they have good intentions, but please dont act as if anyone is better off because I certainly wasnt any better off that way. After time to heal some and reading through the stories of others I came to realize that I had what I like to refer to as a "best of the worst case scenario" in the fact that I was only blissfully ignorant for 9 weeks and not half of a full term pregnancy or longer. Some women (ones here and elsewhere) have had to make heartbreaking decisions regarding their babies after months of seeing heartbeats and feeling them living inside their wombs.

I understand how lost and confused you feel. How the hell does this happen to us? Why the hell does this happen to us? Just know you did nothing wrong and there is no reason to think you will not go on to be pregnant again and fill you heart with another baby. Yes, somethings will never be the same, but you will survive and things will get better. No one here will ever think you are moaning. This group exists because it is known that talking about it, especially with others who have walked in your shoes, helps you to get past the confused, lost feelings and we would all love to help you find your way.

rachieroo, I am so very sorry for your loss and for the very frustrating situation you currently find yourself in. I would be so angry and just wanting answers. How the hell do they tell you they CANT give you your results. I understand they are not finished with their findings, but just say so then. Just say we aren't sure yet and need to further investigate rather than leaving you worry about it. Grr, it makes me so angry. I'm sorry that I cant offer any advice on time and such as I am in the US and as you know our healthcare system is very different and the route we take is different. And dont even get me started on how flawed it is here! Anyway, I pray you get some results very soon. My situation was similar as nothing was seen upon first scan and suspecting I had been wrong on dates went back a (grueling, anxiety ridden) week later to find we saw "something". Another week later and that "something" had grown, but clearly by that point we should be seeing a heartbeat and i just couldnt take it any longer. Thank goodness I opted for a D&C or I wouldnt have known. Then again, I wonder how many people opt for a natural miscarriage, never find out they had a pmp and are never told to wait so they dont and they have full term, healthy babies. I guess we'll never know. BTW, what a gorgeous baby in your profile pic. She made me smile just looking at her, so I imagine she is what is getting you through this. I know my son was what got me through my loss. Good luck to you and Happy Birthday very soon to her!

MissKane, you're welcome for the explanation. As I said above, I wish I could have verbalized it so eloquently as it is perfect. I have no idea who originally penned it, but it is beautiful and captures exactly how I feel and I imagine every woman who has lost a baby feels.

I agree with you, Jamaris Mummy is one of the strongest people I have ever met, virtually or in person. She embodies courage and strength far, far beyond her years and her attitude is truly inspirational. I feel very lucky to have met her and every woman on this board and wish I had found them sooner. It would have been so much easier to endure the first few months with their support.

I think you also have a very healthy attitude about how to deal with your feelings. You absolutely should allow yourself to feel badly for yourself and cry whenever you need to cry. You must get it out or it will eat you up. I pray you find the proper experts to help you in your situation to figure things out and put you on the path to a complete family. You deserve it just as much as the next person. Big hugs to you and I cant wait for the day that you return to tell us that you are pregnant, the day you have your anatomy ultrasound and that everything looks great and ultimately the day you come to announce you have given birth. You have to be positive that it WILL happen for you, I know it will!

Love to all you wonderful ladies! We are all very, very strong women!

Amanda I think its great you wrote a 'novel':haha: just seeing how much time and effort you put into helping our new members out is amazing!:hugs:
Thankyou to you and MissKane too, for your kind words of me. I certainly dont feel strong, believe you me I feel like I am much more of an emotional person now, I cry ALOT! lol happy tears and sad, and I am very sensitive too. Its mind boggling how pmps and mp's change you.
Mummy2Corbin, my pmp was actually diagnosed via ultrasound when my baby was still very much alive and kicking away, I didnt have to wait for results it was very clear to the dr's what was wrong. The official testing tho done via amnio was sent to the lab and i had the FISH results so knew them the next morning. they only confirmed our dread and I was booked in to deliver my baby the following day. My case was fairly extreme tho, my organs were under extreme pressure and the dr's advised if I didnt have Jamari soon my organs would brgin shutting down.It all happened to quickly, and left me in huge shock. But i would imagine the waiting to be unbearable, :hugs: hang in there we are all here for you..:hugs:
rachieroo im so sorry for your loss, :hugs:I thought it was just in my country but it appears there are flawed medical systems the world over! I think alot of dr's are losing compassion for patients and you ladies who are in the early stages of your loss are the ones who require the most compassion, help and understanding. I have met some pretty horrible medical staff, who I wonder how they keep their jobs, its only every now and again I meet a lovely dr/midwife/specialist. Sad isnt it? I know dr's have to distant themselves a little from situations, it must be hard to see some of the things they do, but still I think that doesnt stop them from being able to offer genuine support. I hope you find your answers soon, somebody gets off their a** and helps you out! You must be so upset you dont need to be made feel angry too.:hugs:

Amanda-yes thankyou for noticing Jamari's birthday/angelversary coming up:flower: im not sure if i mentioned it but we are flying home on his birthday, i think its no coincidence that we will be in the sky on his day:cloud9: its going to be emotional, it blows my mind that its almost been a year!! & you didnt upset me at all, It was lovely you acknowledged it and Im glad to hear the actual day feels calming, i agree it makes me a bit anxious to know its coming up, and what it could of been like if that day never happened, and he was here with us. I just think hes a special little man up there helping god out, and his soul travelled to us for a short while, for whatever purpose, it was somehow meant to happen.

prayers and wishes to everyone:kiss:
 
thank you for all your responses. My discharge letter says a complete mole and that the mri pretty much confirmed it. No one said complete mole to me so only when i looked at my letter it said that. I also think my hcg on Wednesday was 225,000 Thats what i Can make out anyway. Just waiting for the actual results i guess and to be contacted by charring cross. How often Will i send urine? Xx
 
Mummy2Corban its weekly to begin with, then I think two weekly? They send you a pack on the post, with a pot and return envelope and everything, and you send them the sample the next day.

Kate :hugs: I think you're stronger than you think :hugs:
 
thank you. So hopefully ill get something through soon to start it all off xx
 
another question for you ladies how long did you feel sick for after? As Im feeling really sick still x
 
It was pretty soon that the sickness went, maybe a week, though I think the upset / stress / worry doesn't help :hugs:
 
thank you for all your responses. My discharge letter says a complete mole and that the mri pretty much confirmed it. No one said complete mole to me so only when i looked at my letter it said that. I also think my hcg on Wednesday was 225,000 Thats what i Can make out anyway. Just waiting for the actual results i guess and to be contacted by charring cross. How often Will i send urine? Xx

Hi Mummy2Corban, my hubby had been on holiday so haven't been checking in for several days. I'm so sorry for your loss I too had a complete mole. My HCG levels went extremely high, and I found the sickness so frustrating - total kick in the teeth after being told I no longer had a baby. Before they confirmed it was a molar pregnancy, and thought it was a miscarriage they advised a natural miscarriage, I struggled with this for nearly 2 weeks with the sickness getting worse each day, but after my D&C the sickness subsided within a week. I sent urine weekly then fortnighly then monthly. I was looked after at the centre in Dundee. I had to wait about a fortnight to have it confirmed it was a complete mole after pathology had done their testing, although the docs at the hospital told me this was the most likely straight after the op.

Thinking of you.

The first few weeks were the worst for me not only emotionally but I felt in limbo as I wasn't being looked after by a doctor or by the molar clinic, once you start having contact with Charring Cross I'm sure you will feel more in control. Also as soon as you have their number I wouldn't be afraid of calling the team there, as they provided me with so much information, as most of what I got from the hospital or internet was very vague and made me feel very isolated.
 
Hey ladies, hope you dont mind me popping in! thanks to mummy2corban i found this thread :)
I had a scan at 12 weeks and the found a sac measuring 7 weeks but no baby, a week later they did anohter scan to double check that my dates werent wrong, and it was then they seen 'something' on the scan. They didnt know what it was and told me their only explanation was partial molar pregnancy.
I had a d&c and the tissue was sent for testing. I had a blood test the same day as my second scan to check hcg levels, but have had nothing since. They dont know if it was partial molar or normal mmc, and i have been told nothing!! I tried ringing my ob/gynae and was told that they couldnt tell me the results as they have been sent to London for further testing and a second opinion.
Has anyone else been through a similar situation, i just want to know if this much contact with the hospital is normal??
Sorry to all of you that have been throught this awful experience and congratulations to those that are expecting again and have their precious rainbow babies! xx

Hi Rachieroo, sorry for your loss too. I have just replied to Mummy2Corban I'm so sorry that you too are going through such a horrible time. I pestered the hell out of my hospital as I got such a lack of information from them and wanted to know what the hell was going on with my body. The hospital might not be able to tell you whether it was a complete or partial as this does get sent away and it took a fortnight for my results to come back, but like I mentioned to Mummy2Corban the doctor who performed the op did give me his best guess that he thought it was a complete mole.

They SHOULD be able to tell you your HCG level though and if you are getting nowhere I would see your own doctor and get them to chase it or get them to take more bloods. Your blood levels are a good thing to focus on over the next few months and watch them dropping, they will also reassure you and stop you worrying about the need for chemo etc...

Good Luck I hope you get somewhere over the next few days. The insensitivity of the hospital at my distress and worry really upset me, but I would pester them and if they annoy you, come here and rant and you'll get the support you deserve x
 
i am trying to be positive as best as i can, i spent days just crying all day long-and sometimes i'll be okay and have a breakdown but its okay...i learned you have to express yourself however you need..and just know that things will happen --One thing i will stress is that if you dont feel like your doctors are giving you the compassion and treatment that you need ...LEAVE....i truly feel that emotionally effects your pregnancy two especially after going through something as seemingly rare as a molar pregnancy or any miscarriage your going to naturally have anxiety and you need drs. that will understand that and comfort you at the same time giving you medical advise. ...

sorry if i'm babbling on.....

prayers to all ..

Miss Kane I think your positivity after what you have been through is amazing. I whole hearteadly agree with finding doctors and specialists who understand and are sympathetic. I think we are quite lucky in the UK that we are referred to 1 of 3 specialist centres who deal with this and know their stuff. I think in general mainstream hospitals and medical staff can be extremely insensitive due to the rarity of molar pregnancies - which just makes you feel even more isolated.
I think your idea of looking into alternative therapies can only be a good thing and I'm sure you will get the baby you deserve one day soon. :flower:
 

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