Molar Pregnancy
*Full disclaimer: I am not a medical professional. I do not claim to be an expert or do I recommend any medical advice.*
Currently my husband is scouring the aisles of Trader Joe's trying to pick out a wine to bring home. He'll probably grab two because I didn't tell him what kind - just that my anxiety seems to be winning today.
Its been 7 weeks since I lost my baby and a quick glance at my calendar today reminded me that this was our gender week. And then I'm reminded that for the next 365 days we will have a lot of first milestones and each one of this will continue to hit us. It'll get easier I know but today just wasn't a good day. We've tried really hard not to dwell in the negativity but this year really took a toll on our hearts.
I didn't sleep well, I woke up with a stiff neck - probably from my pillow falling a million times. We had a pretty big internet outage which caused a chaotic work day, it stormed and the power went out. Normally these things don't really matter, and they definitely don't cause stress, but my calendar was circled today because today my baby would have gotten a name.
I thought Juan and I would be able to grieve quickly after my surgery. I thought we'd go on a trip, I'd heal for a couple of weeks and then we would work on getting back to normal. We'd start planning dates again, we'd keep our minds busy and not because we were trying to replace our baby, but I thought by October we would be trying again for our next baby. The universe had different plans.
I scheduled my two week check up to be cleared for normal activity and to discuss the continued healing and when it would be appropriate for us to officially start trying for our next baby. I sat in the room waiting for my doctor when he opened the door and suggested we would be more comfortable discussing everything in his office. "Oh how nice I thought". HA! He sat me down and he said "Shawnee, we sent your baby to pathology and we have every reason to believe you had a Molar Pregnancy". "Oh okay", I said pretending I knew what the heck he was talking about.
"It's concerning because even though we believe it was a partial we have to be sure that it wasn't a complete. If it was a complete then I will have to send you to a OBGY Oncologist."
I've seen it in the movies where people are speaking but you can't really understand what they are saying and everything is a little fuzzy. All I caught at the end was "so you need to get blood work every Monday for the next few weeks, and then I'll see you back in two weeks... I'm waiting on John Hopkins to send us their report as well" - I'm sorry John Hopkins, this is it - I'm obviously dying. All I wanted was a baby and now I'm dying. Cool.
I stood in line waiting to schedule my next apt and I was shaking, trying not to hyperventilate in the actual office.
I made it to my car, called Juan and all I could say was "something is wrong with me, they said we had a rare pregnancy, somethings wrong, something..tissue, oncology maybe chemo..I don't know somethings wrong". I couldn't breathe. Thankfully Juan came straight home so we could actually research it.
Molar Pregnancy
To give you the textbook Mayo Clinic addition of the what a Molar Pregnancy is : "A molar pregnancy — also known as hydatidiform mole — is a rare complication of pregnancy characterized by the abnormal growth of trophoblasts, the cells that normally develop into the placenta."
It's rare because it's about a 1 in 1,000 chance that it can happen. Also, it's way more common in the UK and surrounding areas versus the U.S
There are two types of Molar Pregnancy - A Partial and a Complete. In a Partial Molar Pregnancy, there may be a baby with a heartbeat, but the baby is found to have 69 chromosomes. YES, 69! Partials most often occurs when two sperm fertilize an egg, resulting in an extra copy of the father's genetic material. In a Complete Molar Pregnancy the placental tissue is abnormal and swollen and appears to form fluid-filled cysts. There's also no formation of fetal tissue. (Mayo Clinic and other research sites have stated this). The reasons my doctor really believed we had a partial was A) we saw the baby's heartbeat and B) Pathology found 69 Chromosomes. A partial would have been the better case scenario in all honesty. My Dr. continued to explain that in a partial there is a 5% chance of still developing gestational trophoblastic neoplasia (GTN) and in a Complete there was about a 35% chance. GTN occurs when the HGC levels do not go away after the tissue is removed (D&C) and the tissue starts to rapidly grow back, sometimes becoming embedded in the uterus. In extreme cases this can turn into cancer and has the potential to spread all over the body. (Probably why I couldn't breathe when I was leaving his office).
The good we held on to was that my doctor caught my miscarriage/molar pregnancy early and my D&C was preformed early. So for the next few weeks I would get blood work every week. We would monitor my HGC levels, we would check pregnancy tests and we would wait for John Hopkins to confirm which type of pregnancy we had. If I had a little person on my shoulder they probably would have whispered "Yeah Shawnee, just go home and wait to see if you are baby ends up giving you cancer, cool?"
Everything seemed very dramatic in that moment, I'm also a dramatic person though so what's new? Juan and I researched as much as we could and while it's still considered a rare thing we were able to find a few documents, mostly based out of the UK. Juan read for hours right next to me while his mom and sister researched right next to him. Whatever happened we would fight it, we would figure it out. On top of this anyone who has a Molar Pregnancy has to be monitored for up to a year after regardless of which version they have - and that means you can't even START to try again for a whole year. Then, even though its a very 1-8% chance, it can happen again. If it came back complete, and my levels didn't drop I would have to go to an oncologist, and then then we would turn to a more aggressive approach meaning - chemo pills or something similar. As I continued to research, I felt slightly defeated because the only stories I could find were the ones that had posted their chemo journeys. ( I would like to note here that there is a 98% survival rate for this - but those first few days I was in worst case scenario)
When I say this year took a toll on our hearts, I'm not lying. I jokingly started keeping a list and I would force myself to write a lesson or something good that came out of it just so that my connection with God could continue to bring me strength and courage. Juan and I grew closer not only in our relationship but with out faith. Juan had never said his prayers out loud before but we started reading prayers together, We read them from my english bible, we read them from his grandmothers Spanish bible, we read them off our phones - just anything that brought us closer to feeling like we had a comforting blanket over us and anything that made us feel like God was perfecting our rainbow.
At my checkup apt I walked in with sweaty palms, I had never prayed so hard in my life before walking in that office. I had never prayed so hard for a negative pregnancy test. The irony is not lost on me. I looked over the nurses shoulder. "Is it negative? Please be negative... oh I mean like I'm sad don't get me wrong but if it's negative he said that was good.". "oh yeah hun, it's negative" She laughed. I probably sounded a little too excited but I was just praying that it really was good news.
"So good news... your HGC is going down! it started at 80, and went down to 25 within a week and now your test is negative so that means it should be down at around 20 or so". I've never felt so relieved. Honestly relieved. He continued to explain that I would still need bloodwork for the next few weeks and then if it continues to stay down I will go to once a month for the next year. Also, birth control was highly recommended as he explained again that trying before the next year could really harm my body and that my uterus would still be healing for the next few months. As of right now we are pretty optimistic about it and I know if for one second it turns the other way he would treat it aggressively - thankfully. It was all so scary but for the weeks to come I'll continue with my scheduled bloodwork appointments and checkups and continue to lean into my husband as we continue to lean into our faith. With the little bit of good news we received it felt like we were finally able to just miss our baby without all of the extra health scares on top of it. It felt like we could sit in the quiet and just miss what could have been, feel our feels and know that God has a plan for our rainbow and that we WILL be parents in whatever way that takes us.
I'll keep you all updated, but please if you are going through this and need someone to talk to, please reach out!! As we find out more information I will update :) Thanks for listening!
https://www.mayoclinic.org/diseases-conditions/molar-pregnancy/symptoms-causes/syc-20375175