A month and 2 days since I shared what I thought was the worst thing I could share. I had to re-read it now, to try to figure out where to begin. It hurts every inch of my soul to read it, especially knowing how much worse it was going to get. For 6 days, I mourned losing a baby. I raged over everything; but I had no idea how angry I would get. I sometimes wonder if I’ll ever go to the bathroom again without my mind preparing me for too much bleeding. I was in so much pain with the cramping… And I was heartbroken, for myself and so very much for my Charly. For 6 days I experienced a miscarriage, only to find out I was still pregnant. But this was not good news… Because there is a difference between a pregnancy and an ectopic pregnancy.
Something isn’t right
Everything started on the Tuesday. My beautiful Dr C was in touch constantly… But because it was so early, there was no urgency to see him. He gave my body the space to do what it needed to, while keeping a close eye on me… He made time to see us on the Saturday morning. The hospital was so quiet. He hugged me and I cried like I might never stop, but I did. I can’t imagine surviving what I have been through without this special human.
Before we started the physical exam, we three sat and talked. About what I was experiencing physically and emotionally. It was the first time I could talk to Brett properly about where I was at. We talked about miscarriage and how terrifyingly common it is. And we spoke about the “what next”. In that moment, I wanted to start trying for another one as soon as it was safe. For me, after realising how much I had wanted the baby. And for Charly, to give her the baby brother or sister she deserves. My Charly is not the same now as she was before all this; at least it seems that way to me.
And then we did the examination. He found that I had a large clot in my uterus, which is why I was bleeding so heavily. Dr C is very much a by-the-book man, and I am so grateful for that. I suspect he knew when he saw that clot that things weren’t what they seemed. I was going to check my hormone levels straight from there, so he reserved judgment until he had the results.
He explained that I may need to have a D&C (dilation and curettage) on Monday, depending on my hormone levels. A D&C is a short procedure, under anesthetic. They dilate the cervix and use a tool to “clean out” the uterus, in my case that very large clot. I would go home 5 to 6 hours later. The hope was that my body would do its job and continue breaking down the clot as the hormones dropped.
Day 1581 – 9 Jun 18 : I am so grateful for my family. Charly was surrounded by love and fun (between the two of them fighting like little cats every hour or so). Our morning was less good. The doctors follow up had some trauma today, in spite of my doc being one of the best most gentlest souls on the planet who is mourning this loss with us. My heart cannot process what so many other women must experience having to go through this with a doctor who might be a stranger or just another person they see every few years. Again, I am so blessed with the people in my world. 2% of pregnancies that end before 6 weeks can’t complete the miscarriage. As of right now, my body isn’t doing quite as well as it should. This means that I go for another check up on Monday and if there hasn’t been enough of a change from today, I have to go into theatre and under anesthesia to ensure I don’t get ill or suffer complications. This has been my biggest fear this week. There is so much that never occurred to me before having to experience this week. I have started to write but the fear keeps stilling my hands and sending me to mindless series and mountains of comfort food. Again, thank you all for the love and the messages and mails that continue to come. I am reading all of them and I apologize if I’m not always responding. I do appreciate every single kind word and thought. Xx
On the Sunday, we were all getting together as a family for my mommy’s 60th birthday. I went to be with the people I love, but I felt very apart from everyone. My cousin’s daughter did my makeup, so I could feel a little like a person, which helped for a while. I never realised, before what I was going through, that a miscarriage is not always something that just happens. It can take a few hours for some, for most a couple of days, and sometimes up to 2 weeks. I was sitting in the kitchen with one of my oldest friends and I remember saying… “I haven’t ‘had’ a miscarriage; I’m having one right now.”
I was in a lot of pain, which I attributed to being on my feet for the first time. Only now do I look back and realise it was because of the ectopic pregnancy. The blood test results came back on the Sunday and showed that my HCG levels were higher than expected. This could have been simply due to the time between my initial pregnancy blood test and this one. But, protocol said I had to come in first thing Monday morning for another one and to check the clot. I think we all knew I would be having a “procedure”.
The Monday-est of Mondays
I could feel Dr C was concerned about me and the hormone results. He is a person I care deeply for, so while nobody else would have noticed, I did. That day is a haze of intense emotions, and unclear memories. I think it was after the physical exam that he first mentioned ectopic pregnancy. The hormone levels might still have been from the time lapse between the two tests… But when considered next to the growing blood clot and its location and his personal experience with ectopic pregnancy, he knew.
Dr C has incredible instincts that have led to him saving lives, including lives of people I know and love. So when he explained that he would be admitting me as an ectopic pregnancy, I knew that was what it was. There was a chance that the blood tests that were to be done straight away may show a downward trend and then I would get the D&C. But he knew and because he knew, I knew.
2% of pregnancy result in ectopic pregnancy. Less than half of women who have an ectopic pregnancy experience heavy bleeding and cramping. Although there is a suspicion that being older might be a contributing factor, it remains unproven. And, other than being 6 months into the “older” category, I am one of a half-to-a-third of women who don’t have any other obvious risk factors. An ectopic pregnancy is usually removed using laparoscopic surgery, through 3 small cuts. A tiny camera and tiny instruments are inserted through the layers of the abdomen, a similar but much less invasive version of a C-section. If there are any complications or internal bleeding, then they perform the same larger incision as a C-section.
From the first mention of the ectopic pregnancy I wanted to call my mom. Dr C had already called down for a wheelchair, which seemed crazy to me considering I had been walking around for just under a week. Being a mom is the strangest thing. For the first time in my life I wasn’t calling my mommy to come to me, to comfort me and make me feel safe… I was calling her to tell her to take Charly home with her for a sleepover; to distract her, and to keep her safe. I was so scared I wasn’t going to survive that surgery. I didn’t know much about ectopic pregnancy, but I knew it could be life threatening.
As soon as I got to the surgical ward, I was given medication to stay calm and my blood was taken. Dr C was calling everybody and making sure that everything was happening faster than was probably possible. I think I was in shock. Once I spoke to my mom, I remember joking with the nurses as they swarmed the bed to insert drips and check levels of all kinds and completed forms.
Within seconds of me getting on the bed, a nurse came to me and took my hand and told me how Dr C had saved her life when she had an undiagnosed ectopic pregnancy a month before. She didn’t have to share that with me, something so personal and devastating; but she was so beautiful and so very alive and warm and caring, that I am so glad she did. I remember Brett getting a bit of a fright when she ran towards the bed as they wheeled me to theatre and her reassuring him that she was just coming to give me a hug. My own guardian angel.
I am afraid. Like cold in my soul afraid. We have discovered that this was actually an ectopic pregnancy. So now I am going in for a surgery to fix that and prevent complications. I am so so so scared and all I want to do is hold Charly. I am not a fan of the universe today.
A post shared by Mandy Lee Miller (@pregnantincapetown) on
I remember Brett walking alongside me and then having to stop at a line. I vaguely remember talking to Dr C, a nurse and an anesthesiologist. But I don’t remember going into the theatre. There are vague memories of moving from the trolley bed to the surgical bed. I don’t remember going under or waking up… Just being awake and insanely drowsy and Brett reading me all the messages from people who saw my social media posts before I went in. So many messages. I just wanted my mom to send me photos of Charly and she did just that over the 24 hours.
Dr C came to me once I was awake and checked in. He told me what they found and that he had had to remove the right Fallopian tube as well. They also did the D&C to remove the clot and anything else that might have remained. We met with Dr C on Monday morning at 9h15, I went into theatre around lunch time I think. I was home and in my bed by 11am on the Tuesday.
I still can’t quite believe how fast everything happened. Fast enough to save me from complications and to prevent my Fallopian tube from rupturing. Dr C found my fallopian tube was swollen and inflamed. I shudder to think what might have been if he wasn’t as careful and as thorough as he is. Or even if he had just been fully booked and hadn’t made a plan to see me between patients, to be safe.
If the pregnancy had advanced any further, even by a very short while with the state of my tube when he did operate, it could have caused damage to nearby organs… (He checked for this to be safe, even though it was so early, and found no damage thank heavens.) And then it would have ruptured my fallopian tube, leading to massive internal bleeding… Which could have led to hypovolemic shock, which is the leading cause of death of women in their first trimester of pregnancy.
While it’s rare for women in developed countries to die from ectopic pregnancies, it is common in developing countries. That said, it doesn’t take an overstretched doctor in a public hospital to miss an ectopic pregnancy. I have been sent multiple stories over the past weeks of women who were worried by symptoms, in leading private hospitals in this country, who were sent away. A few even shared that they ended up in the amazing hands of my Dr C, who saved their lives and made it possible for them to be mommies again afterwards.
For most women…
Although laparoscopic surgery is a lot less invasive, it is still abdominal surgery. Getting up for the first time felt very much like the first time I got up after my C-section. In fact, the whole recovery was kind of a fast-tracked version of my experience of c-section recovery… The upside to not breastfeeding a new baby after abdominal surgery is being able to take PROPER pain medication. I spent the first 3 days or so mostly knocked out and snuggling and watching movies with Charly. We told her that my tummy bug wasn’t getting better, so Dr C did an operation and took that bug(ger) out. I showed her the plasters on my belly immediately, and told her that although I was very sore, I wasn’t sick anymore.
For most women, the surgeries I had mark the end of the physical side of an ectopic pregnancy. There shouldn’t be any more cramping or bleeding after roughly 24 hours. Of course, I am not most women… I continued to bleed.
Day 1586 – 14 Jun 18: So perfectly beautiful. I slept til 12:30 today. Then got properly up and managed to get downstairs for just over an hour. Had my first visit today from my precious @josievanzylcpt and her beautiful littles. Was so good to see her face. The little crack that let in the real world has started a trickle of feelings though that I’m not quite ready for. I’m not physically strong enough to deal with the big feelings of a baby that couldn’t exist that might have killed me if I hadn’t known it was there from the beginning. Only I didn’t know what was there if it could never have been a baby. And my heart is bursting with happiness for friends who are carrying and the perfect perfect little humans others have welcomed in the past days and weeks, which feels good and normal but then feelings today of sad and hurt that I don’t want mixing with that. Too much. So I’m going back to sleep now again. A bit more healing of the body before facing the mind again.
Dr C was still checking in every day, I was achy and uncomfortable, but getting better slowly. When I told him I was still bleeding, he wasn’t happy… It happened in rare cases, but it wasn’t common. My 1 week checkup was due and he let me wait until the Sunday to see if I would stop bleeding. I became increasingly afraid to go back to his office, which I found upsetting in itself. I hated that this was taking away somewhere that had been a safe space for me. The fear that I would be rushed back in to surgery and that I wouldn’t survive this time was very real.
Is this my life now?
I was so tired of being the exception to the rule… But also some part of me just accepted that if there is some strange thing that might happen, it would likely happen to me. There is something truly scary about bleeding when there is no real medical reason to be bleeding. On Sunday we found that the clot was back… Not quite as big, but still too big and there when it shouldn’t have been. This is why I was still bleeding. I had begun to believe that I would just bleed forever. More blood tests for hormone levels.
I learnt about a rare complication where a woman’s body keeps trying to build the placenta, even after losing a baby. Dr C didn’t think that this was what I had, but it was a possibility. If this was the case, or even if my the hormones weren’t dropping enough to destroy the clot, I would need a Methotrexate injection… A cancer drug that kills everything, injected into the uterus. It has various awful side effects, as cancer drugs usually do; so we really really needed the HCG levels to be below 2000. They came back at 1000. I cried so hard from the relief of just that one thing going my way.
Always the exception
On Monday night, as I was listening to Charly’s bedtime Ed Sheeran playlist with her in my arms, I started having weird cramping. I actually thought it was an emotional reaction to everything that had happened and listening to Small Bump. Instead, the cramping got increasingly worse. I ended up sitting on the toilet, thinking I had picked up some kind of stomach bug. It still got worse and I was eventually afraid enough to call Brett and ask him to message Dr C for me. When we spoke I could hear his heart break over the phone. I was experiencing contractions, the real-deal-delivering a baby kind. My body was trying to kill that clot and get it out of me.
For hours, I got to practice the tricks that I learnt 5 years ago in prenatal classes… except there would be no baby from it. I walked and crouched and breathed and I took all the drugs I safely could until I passed out. I woke up feeling as if I had been beaten up from the inside. All my muscles ached and throbbed and burned. The contractions were gone, but I hadn’t passed the clot yet.
Day 1590 – 18 Jun 18 : A day late posting. Yesterday was tough, last night was worse. My little beauty was awake all night on Sunday. I suspect she is getting sick, she is coughing and miserable, but mostly she was just awake. When you are recovering from surgery, being awake all night trying to lie with your arm off the bed to be held onto by the child on the mattress next to the bed is very physically painful and beyond exhausting. So yesterday, Monday, I was very sore and uncomfortable all day. This took a turn for the worse when just after C fell asleep last night, I started getting excruciatingly painful cramps. Not wanting to overreact (haha) or face the possibility that I might need to be rushed to the hospital, I tried to take my last hardcore painkiller (alternative to morphine) and use the smallest most useless bean bag to ease the pain. When that didn’t help after half an hour I started messaging my poor darling doctor. The thing about having the bet doctor in the world and knowing that there is genuine love and affection between you is you can hear the very real sympathy in their voice. The hell I was experiencing was my uterus contracting to try get rid of the last clot my body seems to not want to let go of. Yup. So for hours last night, until the combination of the Targinact and Genpayne knocked me out, I was experiencing burning contractions that only abated slightly if I was walking or standing or squatting – after having no sleep the night before. You guys, can somebody have a talk with the universe here, this really really doesn’t seem very fair. I am exhausted all the way to my soul. My body hurts all over from muscle spasms and walking and moving around. I feel nauseous. Seriously can this not just be done now? Isn’t it time?
Dr C was hopeful though, because the contractions had stopped. I had a couple more days, if mean my body didn’t begin having contractions again. The next day, 8 days after the surgery, my body passed the clot. Momentary relief, which was quashed when I started bleeding heavily again. We scheduled another appointment for the Saturday. If I was still bleeding, I would need to take a pill that would bring on intense contractions for a few hours, along with a whole lot of pain medication. On Friday morning, my bleeding finally started to slow and by Saturday morning it stopped. I bled for 18 days.
Ectopic Pregnancy – the thief of mourning
For the 6 days I thought I was miscarrying, I mourned. I let myself feel all the pain and hurt and loss and anger. Netflix gave me somewhere to hide from my own life for a few hours at a time. My support system was amazing. The response to my last post shifted something inside me, realising the extent of women out there who have been there.
And then suddenly, I hadn’t lost a baby anymore. I “survived an ectopic pregnancy”. When you look up ectopic pregnancy, you do not see the word baby… Except where desperate women have searched to find out if their baby could survive one. The words that come up are “fertilised egg” and “not viable”. It is a “life threatening condition”. A tubal pregnancy’s only outcome is death. So how is it in any way a pregnancy?
I feel robbed. I spent the last 4 weeks focusing my energy on physical survival. Not because I was at risk anymore, but because I know I was and my body was trying to recover. While I was waiting to stop bleeding. Worrying about what the next complication would be. Crying myself to sleep because I couldn’t carry Charly to bed or because I was short tempered with her, because I was sore or tired from nightmares. The nightmares where I am pregnant, in my last trimester… Tired and achy and feeling the baby move inside me… Only to wake up and realise the tiredness and the achiness and that pulling inside me is recovery from a surgery that is the opposite of having a baby.
I know I will probably get there eventually… That emotional healing from something like this can take years. And so I keep moving forward.
And that question?
I am 36 years old. I am not a healthy 36 years old. Pregnancy is hard on the body and on the mind, especially after an experience like I have had. I could have died. I’m not stupid, I know that we could die at any moment doing anything. But it feels like the dynamic is somehow skewed when it is related to bringing life into the world. For a while after the surgery, when I asked myself or somebody asked me if I was going to “try again:, the answer was as fiercely no as it had been yes when I thought I had miscarried. And largely for the same reason – Charly.
Day 1592 – 20 Jun 18 : My heart 💜 She asked me to get photos of her outfit today. Hat and mittens knitted just for her by a special Aunty, unicorn pants, unicorn long sleeved tee and unicorn gum boots with purple fluffy zip up. And the hair!!! Look at all that gorgeous hair 💜 *** For those who have been following my current life, I’ve shared a very long stream of videos on #instastories and saved them in my highlights. It’s heavy going at times and quite intense and I will not b win the least offended if people don’t watch. It answers the questions I’ve been getting on what exactly happened in a fair amount of details, what it means for physically conceiving again, as well as how I am and where I’m at. It helped me to do this. It’s the first time I’ve verbalized everything that has happened so far. I will write the blog post soon now that it is out of me. As always, sending you all infinite love and appreciation for every one of you that have taken the time to watch, send love or message xx
Only 1-2 percent of women will have a second miscarriage after the first. And a miscarriage, while devastating emotionally, is rarely a physical risk. So trying to have another baby with those odds, risking more heartache to make Charly a big sister… That was a relatively easy decision. 10% of women who have an ectopic pregnancy will have another ectopic pregnancy. So, 1 in 10 women. I would be risking going through all of this all over again. So it is a big decision and I haven’t made it yet.
I am being torn apart emotionally over it, because there is a clock on it. Right now, after the surgery and everything else… now is the time when I have the best chance of falling pregnant physically. There is this weight on me constantly as I try to decide if I have the strength or the bravery to face even trying. Do I want another baby? Yes. Will I try to have another baby? I don’t know.
What I do know…
I love my husband fiercely; he has been incredible through all of this. I am so very grateful for Dr C and the role he plays in our lives. My baby girl is my whole world; I need to find ways to be a better mom and a better person for her. I’m incredibly blessed with my family – my parents have surrounded us with the most powerful love and support, especially with Charly. My sister and brother-person, for always showing up, with love and flowers.
My friends… I don’t know what I did right in this world to have the friends I have. There hasn’t been a moment in this past 2 months when I have felt alone, even for a moment. From meals and Ed Sheeran tickets from my Josie, to reliving past losses to give me a space to cry, to checking in day after day, sometimes hourly… You are all so very loved. I see you and you have my heart for always.
I’ve been blown away by you, my online family. I bled with words on my daily Instagram posts and there were always endless hands reaching to hold me in the space I was in. I am awed by you all. The flood of love, of faith, of kindness and empathy, and the things you have said to me about me and the difference I’ve made, no matter how small, in your lives… You have changed me forever. You have given me a new perspective on myself and the role I have in this world.
I have no words for the women who have been where I have been, no wisdom on how to get through. Because I am not through. But I am still moving forwards. I hold you in my heart.
Sending you all, all the love xx