June 16th, 4 years ago we discovered that I had had a miscarriage at 12 weeks. It's been a quiet weekend for me, remembering this. Here it is. This is Mira's story.
A few years after having Mac, I decided it was time for another baby...I had always wanted a big family, and thought, why not? Considering my history of trisomy 18 eggs at only 29, I thought waiting around was not such a great idea. I went off the pill, got my period, and waited....and waited...and waited some more.
And had a hot flash.
And another.
Maybe I was overheated? Pregnant already? Off to see Dr.J. She figured I just might be pregnant, or maybe my body needed a cycle or two to adjust after coming off the pill, no biggie, she ordered some blood tests, and told me she'd call. And she did.
I wasn't pregnant, and my estrogen was undetectable, and my FSH was a little high. Like 86. Not having a clue what that meant, I asked. She told me it could be premature ovarian failure, or a lab mistake. So she reordered the tests. I still hadn't had a period and felt quite bizarre, so I went along with it.
Now it was 66.
I googled high FSH. And my universe fell in.
Every medical website held out absolutely no hope and had horrible things like higher risk of mortality and morbidity, osteoporosis, premature aging, sexual dysfunction, and of course, incurable infertility.
All of it utter exaggerated bullshit I know now, but then, terrifying and depressing. I'd been on Wellbutrin in anticipation of trying again, since I had heard that it was safe as an ADD drug in pregnancy, and was going to go off stimulants for the duration. This btw, was utter bullshit as well. Stimulants are completely safe in pregnancy, and Wellbutrin is a big unknown, not an SSRI, but something else, and the only studies are very small. Stimulants have been studied for years and after much searching by Motherisk at my request, they cleared them at therapeutic doses.
But I didn't know that then, I just knew that specialist after specialist was telling me I would never get pregnant again. Two different clinics here in Toronto refused to give me appointments, right over the phone unless I agreed to donor egg ahead of time. Standard policy for anyone who has ever had an FSH over 10 in their lifetime. Not exactly ethical medical diagnosis, IMO, and certainly inappropriate to discuss a treatment plan like an ultimatum.
One Doctor agreed to give me HRT at one point, I was so desperate for relief, and I went on the pill for a month. At that point I had had ultrasounds and bone scans and been poked and prodded and referred to the nth degree. Dr.J. remeasured my E2 & FSH after that month on Day 3 of the next cycle, and shockingly enough, after 3 weeks on the pill, my FSH was 4, and my E2 was 36. I was floored....she told me not to take anymore of the pills, and just keep coming back for more blood tests. And I did....I had magically snapped back to normal for months and months afterwards. Periods a bit off, but still coming 27-30 days apart.
The REs kept saying that the new tests were meaningless, and it was impossible for me to concieve without donor egg, and still wouldn't give me appointments, but Dr.J. finally found someone willing to treat me, or at least see me for a consult.
The day of the appointment with the RE, it turns out, was in the middle of March Break. Mr.Cotta was away on business and I was taking the opportunity to paint half our house and do some major work.
I go in to meet the RE Dr. W. covered in paint splatters feeling foolish. She is not so good with the bedside manner, but I can live with that, right? When she learns that once again my period is late, she insists that right there we do a urine pregnancy test, I look at her and think, "What an idiot, how can she be so cruel? Doesn't she know I'm out of eggs?"
Lucky I didn't say it, because the stick turned blue after she dipped it! I proceeded to faint right there on the spot, just like in the movies. Dr.W. and the nurse ran to catch me, and helped me over to the lab to get an hcg beta blood test. All the while I'm crying and babbling like a fool, "I don't understand, they said never, they said never...how is this possible?" I mean for Christ's sake, if 5 expert docs at 3 different major hospitals tell you it is completely impossible to get pregnant with POF and Dr. Google finds you a support group that says you can, who are you going to believe? Yep, you guessed....
My beta that day, at what we guessed was 17-18DPO, was 1100. And it kept doubling...perfectly.
At first, I didn't tell my husband, mostly because I really didn't think it was true, and hey why get him excited over a malfunctioning pee stick? Finally, I broke the news. He freaked, since he wasn't sure if he even wanted to be around a pregnant crazy woman after enduring a crazy menopausal woman for months. He came around after the first ultrasound. Week after week we went in and saw the baby swimming around, waving, and sucking it's little thumb. At 11 weeks the final ultrasound and I'd graduated from fertility school! I made it through the first trimester and nothing could go wrong, right?
Wrong.
We went for our nuchal test the next week, and since we were going in to a hospital based genetics clinic for it, SARS had taken over, and so had the stupid people. SARS was only ever spread around by the first family that got it in China and travelled back to Canada with it, and medical personnel after that. Not one person without a hospital connection even got sick. So naturally, instead of blaming themselves for not putting on a mask and washing their own hands, doctors separated wives from husbands, children from parents, and acted like jerks.
Even though I was high risk, Mr.Cotta was only allowed in the clinic waiting room. I asked the technician if I could see the baby's heartbeat first, and then I would gladly lay still for hours if need be while she did the rest. She mumbled something and started scanning. I kept asking her what was going on, and she kept ignoring me, which only made me panic more. Eventually she got my husband but still wouldn't tell us what was going on.
She left to consult with the radiologist and came back to tell us that our baby had died and there was no heart beat. I wanted to see the screen because I didn't believe her. She was merely a technician, and of course the radiologist wouldn't come in to tell us to our face, even though he was legally required to. I guess he couldn't face a woman with a dead baby...
We met with our specialist for the day and arranged for a second ultrasound at my own hospital's clinic to confirm the baby's demise, because I wasn't going to have a D&C unless I saw the baby had no heartbeat with my own two eyes. When we arrived at that clinic, we discovered that we had to pay for a second ultrasound if it was held on the same day, which of course sent me into hysterics. And cash only, no credit cards or cheques, or even receipts. For Americans, it may be hard to understand why paying out-of-pocket mattered so much, but the criteria for OHIP coverage in Ontario is medical need. We weren't there for a video to show to our friends, we were there to get a second opinion on whether or not our baby was dead. Before doctors turn off life support on a coma victim, they need 2 different EEGS, and yet somehow, I'm expected to end my baby's life with a D&C even if the first technician might've been an incompetent twit?Not for my miracle baby!
Mr.Cotta ran to a bank machine and paid. The second radiologist was nasty and refused to let me see the screen until I insisted, and even then only for a second. I just kept thinking, lady, we just paid you cash...HELLO, you aren't in charge this time. There was still no heartbeat according to her, and she made it clear that she had gone over everything again, but I was so angry and upset at this point, I didn't know what else to do. I had to go home, even though I still didn't believe it.
The next day we made an appointment to see Dr.W. about a D&C and she scheduled me in the day after that. I woke up in agony, not quite what I had expected. I was bleeding so badly I was sent for another ultrasound. Unfortunately, I had somehow retained a piece of placenta again and had to get a second D&C a few days later. During this I was also on large amounts of antibiotics because of the fear of infection.
Then the descent into a special hell, a third D&C when my uterus filled up with blood clots and my abdomen began to swell. Afterwards, I briefly felt normal, but I still had more blood clots and serious bleeding. Another couple of rounds of Cytotec and I began to believe I was cursed. All the while, I'm in hideous physical pain, which doesn't help my mental state. I spent that summer lying on my couch taking painkillers, crying and wondering why my one shot at pregnancy had ended, so late, so long after all that all those great milestones. I later discovered that she was a perfect little girl, chromosomally normal. (And yes they tested her tissue not mine...)
Goodbye, Mira. Mama & Daddy loved you, no matter how briefly you existed, no matter how small you were, you were our daughter, and I'll miss you forever.
How awful. Thanks for sharing.
ReplyDeleteA totally awful situation, but made so much worse by arsey medical professionals. I despair sometimes.
ReplyDeleteI'm very sorry for your loss.
Excitement, happiness and saddness....all extreme and now this day will always remind you of a great loss. Wish there was more I could do other than acknowledge that. (hugs)
ReplyDeleteThere are no words to express the pain that I am sure you felt and continue to feel. I am so sorry. May Mira live in your hearts just as you live in hers.
ReplyDelete(((hugs)))
ReplyDeleteIt's so unfair that Mira's not here with you. Even four years later, your pain over her death it still so apparent. I'm so sorry she's gone.
ReplyDeleteI have no words. Just know that I'm thinking of you and your entire family.
ReplyDeleteThinking of you.
ReplyDeleteHeartbreaking. Thank you for posting that story, painful though it is. It gives your Mira a place in other's hearts as well as yours.
ReplyDeleteIt just all makes me so angry. Why are we getting pregnant when they say we shouldn't or can't, but then for no fucking reason, it ends with the death of a perfect baby?! But when we use donor, or IVF/ICSI & PGD, and take drug after drug, we are beating our heads against a giant negative HPT?
ReplyDeleteI am sorry, Aurelia. So angry and so sorry.
So so sad. Especially the asshole medical professionals who treated you that way. I'm sorry. Lots of love to you.
ReplyDeleteIt started like a story that really deserved a happy ending. I am so sorry for you that it ended up the way it did.
ReplyDeleteSo so sorry...
ReplyDeleteAnd having ass-ish medical "professionals" make your pain worse really stinks.
If you can, be gentle with yourself for a bit.
Oh, A., I'm so sorry. I'm thinking about you today.
ReplyDeleteI'm so sad reading your story. No one should suffer so much pain. I'm sorry.
ReplyDeleteHow aweful it must be for you to recap all of these details into one post. ...And, adding in the medical "professionals."
ReplyDeleteI wish so much for you for peace and calm.
I am so sorry you had to endure those events and the loss of your tiny girl. My heart aches for you and your husband.
ReplyDeleteJuen 14th seems to be a sucky day all around - that was my EED before I found out the preganncy was ectopic. Hang in there.
ReplyDeleteOh d\ear God this brought me to tears. I'm sorry.
ReplyDeleteThinking of you on this terrible anniversary.
ReplyDeleteSending you big hugs.
ReplyDeleteThinking of you and remembering Mira.
ReplyDeleteOh, Aurelia, I am so very sorry. I had no idea that you had been through that. This post touched me in the most precious way. Thank you for writing your story. Your strength never ceases to amaze me. Love you, my friend.
ReplyDeleteJust when I thought this post couldn't hold any more turmoil, fear and sadness the story continued to build ... wishing you peace.
ReplyDeleteI'm so very, very sorry. Thank you for sharing your precious Mira with us.
ReplyDelete((((((HUGS))))))
So sorry you had to go through this. What a nightmare. I hate the medical bureaucracy.
ReplyDeleteBut Mira was so lucky to have you as a mommy. Thank you for sharing her story.
What a sad post. To be given hope and then to have it snatched away...it's heartbreaking. So sorry for you and Mr. Cotta and for Mira.
ReplyDeleteI am so sorry that you had to endure such an awful experience. Awful doesn't even begin to scratch the surface either.
ReplyDeleteBut thank you for sharing it, truly.
That is so horrible. It sounds as if it is all so clear for you, as if it was yesterday.
ReplyDeleteAurelia, I'm so, so sorry.... x
ReplyDeleteAurelia, my heart is aching after reading this post. I am so sorry.
ReplyDeleteThanks for sharing this. It's such a sad, sad story.
ReplyDeleteBea