In maternity care, a butterfly is the symbol used for pregnancy loss, and a rainbow baby is a baby born after pregnancy loss
**TRIGGER WARNING – LATE TERM MISCARRIAGE**
Edit from Helen: I really want to thank Caitlin for her bravery and strength in sharing her story. Unfortunately our society does not willingly acknowledge or discuss pregnancy loss, and hence Caitlin's story goes a long way in changing this and raising awareness. Whilst Caitlin's first pregnancy is classified as a 'late term miscarriage', I would rather that we recognise that she lost her first daughter Cora rather than a pregnancy The difference between this pregnancy classification as a miscarriage, rather than a stillbirth, is only a matter of weeks - that's all. I will be uploading a pregnancy loss article in a matter of weeks to provide information on this topic, including prevention, as sadly there is evidence that poor care can contribute to preventable pregnancy losses, as may have been the case here. I would also like to highlight my articles on Trauma & PTSD, as well as Perinatal Mood Disorders (depression and anxiety) - both of these contain helpful resources - if this article causes you some distress, or direct you to the national organisation that supports women and families experiencing pregnancy loss, SANDS.
I have known since the day I met my husband that I wanted to have children with him.
For more than 5 years we were TTC, through that time my body was never quite “right.” I experienced terrible and irregular bleeding, low libido, inexplicable weight gain and various other signs that all was not well with my reproductive system. Unfortunately, due to a prior trauma I also had an irrational and overwhelming fear of seeing a doctor about it, I probably made over 30 different appointments in that time to see different GPs and I would always end up cancelling them or sitting in the carpark of the clinic, frozen and unable to go in.
It was the only thing my husband and I ever fought about, I so desperately wanted to make him a father but I couldn’t get past my phobia to just go and speak to someone. I can remember a few weeks before our wedding, sobbing and begging him to leave me to find someone he could have babies with (thank goodness he didn’t take my advice!).
Then one day my body forced me to face my fears…. It had been an unusually long time (for me) since I had my period, I had taken several negative pregnancy tests, I was lying in bed and I said to my husband that I “felt weird,” I stood up and suddenly blood was pouring down my legs. I spent that whole night in the bathroom, crying and bleeding. I still refused to go to the hospital but my husband sat with me, googling local GPs and finally found one who I agreed to go and see the next day.
Husband drove me to the appointment and almost had to push me through the door. I asked him not to come in with me and when I got in there, the flood gates just opened – I told the GP everything about the symptoms I had, why I was afraid to go to the doctor and how desperately I wanted a baby. The GP I saw was absolutely amazing, she asked me a few more questions and told me she thought I had PCOS, she said she would have liked to have had a pelvic exam done but she understood why I might not want to do that. Instead she ordered some blood tests and asked me to come back in a few days.
The blood tests showed some mild insulin resistance and other indicators that I was suffering from PCOS. The GP calmly told me that this wasn’t a death sentence for my reproductive capabilities and she asked if I would be willing to try an extremely low carb diet for 3 months to see if it had any effect on my symptoms, we would then do more blood tests and she would refer me to a fertility clinic.
For the next 3 months I restricted myself to under 30g of carbohydrate a day, I found it very difficult but after the first week or so I started to feel better than I had in absolutely ages. Symptoms I didn’t even know I had started to clear up, my snoring stopped and I was finally getting proper sleep, I had so much extra energy, my mood was better and my libido was BACK! My period was still a bit all over the shop but it was starting to more closely resemble an actual cycle.
2 days before I was booked to have my 3 month blood tests, I had a hard day at work and I begged hubby to get me a regular twister combo from KFC, he said no because I had come so far without cheating on my diet and he knew I would regret if I blew it so close to the end. I threw myself on the ground crying, and screamed at him that I “ONLY ASKED FOR THIS ONE THING AND I NEVER ASK FOR ANYTHING!!!” and I put myself to bed at 7pm, with no dinner. The next morning I thought to myself “that was a bit of an extreme reaction…” something told me to pee on a stick and before I had even had a chance to put the cap back on…. 2 dark pink lines. I WAS PREGNANT!
I went back to my GP and instead of referring me to the fertility clinic, she was ordering me blood tests and a dating scan, even she was gobsmacked to have seen such a quick change, We established that I was just over 6 weeks pregnant (6 years of trying and I fell pregnant after a month and a half of DIETING?!). Unfortunately, it was at this appointment that the GP told me she was retiring and handed my care to a different GP at her clinic.
The beginning of my pregnancy ticked along nicely, I had some morning sickness and a bit of fatigue but other than that I felt quite healthy. At almost 12 weeks I realized I didn’t have a scan booking letter and all my “mummy friends” told me I should have one… I phoned the GP and they told me I should have gotten a booking letter from the hospital. I called the hospital and they had no record of me...Eventually we established that what SHOULD have happened was that I should have phoned the pregnancy line and “registered” my pregnancy and then my zoned hospital would have contacted me with a booking appointment. Instead what had happened was my new GP had faxed a referral for me to a private OB who had been on holiday for 6 weeks and so nobody had received it. This started several days of desperately trying to squeeze in a 12 week scan and get booked into a hospital.
Before my pregnancy I hadn’t seen a doctor of any type for over 10 years and unfortunately while I was trying to get my booking issue sorted out I encountered several rude people who told me I shouldn’t have left it this long. I started to feel like I was already “failing” pregnancy and my anxiety started to rear its ugly head.
My 12 week scan was the most amazing moment of my life, seeing that tiny baby on the screen absolutely blew me away, I couldn’t believe it was real. I still didn’t have a booking appointment at the hospital so the GP gave me my results, everything was looking healthy and normal and all my numbers were looking great. I tried my best to relax.
At 14 weeks I had some mild spotting….I phoned the hospital and they told me that because I still hadn’t been for my booking appointment (which was FINALLY booked in for 2 weeks later!) they couldn’t tell me much but that if it wasn’t a LOT of blood it was best just to wait until my midwife appointment, just to phone them back if I got cramping or it got worse.
A few days later, I was on the train on the way to work and I felt a definite wetness between my legs. I rushed to the train station bathroom and found a gush of blood. I cleaned myself up and got a taxi to the local Women’s and Children’s hospital just up the road (this was not the hospital I was booked to, it just happened to be close by). I arrived there sobbing and with no idea whether they would even see me with no referral. Thankfully they led me straight through for an ultrasound where we saw a strong heartbeat and a happy little bubba but no obvious cause for the bleed. They also took a (very overdue!) pap smear and told me “some women just bleed, take it easy for the next few days and discuss it with the midwife at your booking appointment.’ They also gave me a letter to give to my hospital… I peeked in the envelope and saw the words “Threatened Miscarriage” and I felt like the worst mother ever – what was I doing wrong?
I continued to bleed for about a week, I phoned the hospital but they repeated that “some women just bleed” and to come in if it got worse. One Saturday morning I went to the bathroom and felt myself pass two large clots, I called the hospital and they told me I could come in. I STILL hadn’t had my booking appointment so a file had not been built for me which meant I sat in women’s assessment for 6 hours waiting. Eventually a midwife saw me and they picked up a foetal heart beat on the Doppler and told me everything seemed fine. They read my letter from the other hospital and noted that they had not picked up any obvious reason for the bleed so decided not to do another scan. They did have an OB come and do another Cervical scrape and the doctor mentioned that I might just have a “sensitive cervix” and that perhaps my placenta was irritating it a bit and causing the bleeding. I was told again that “some women just bleed, go home and try to take it easy, call us if it gets worse.”
Despite what I was being told, I knew something was very wrong but I didn’t know what I could do about it. I FINALLY had my booking appointment at 16 +4wks, I was asked a lot of questions about family history etc, I was weighed and another Doppler test said my baby seemed fine. I brought up the bleeding and was told AGAIN “some women just bleed, call the hospital if it gets worse.”
2 days later I was in a late night meeting and I felt a bit of pain in my belly, it was fairly painful but felt a bit like gas or constipation so I passed it off as nothing. I vaguely remember noticing a bit of “goop” when I went to the bathroom as well but because I was still spotting, I thought nothing of it. I went to bed that night complaining to my husband about “bad gas pains.”
A few hours later I woke with my clothes and bedding soaked in blood. I was getting “waves” of intense abdominal pain. My husband rushed me to emergency and the triage nurses there sent me straight through to birthing. Once there I received a scan and was told that baby was very low, I was fully dilated, having contractions and she would be coming very shortly. It wasn’t said to me but I knew that at 17 weeks, she stood no chance. The next couple of hours are a blur. I remember being asked repeatedly to rate my pain and gradually going from a 1 to a 6 (I don’t think the numbers meant anything really, I just wanted them to stop talking to me), I remember being offered morphine a few times and refusing. Eventually I said yes to the morphine and suddenly all 3 doctors/nurses in the room left. I was desperately trying to fight the urge to push but I felt something slip from my body and I knew that I had birthed my poor little girl. I screamed for help but I assume no one heard me and no one came. It felt like hours before the nurses came back to me but it was probably only 15 minutes. When they came back I told them “something came out of me and I am too afraid to look.”
The nurses took my baby away, cleaned me up and changed my bedding. They offered me the morphine a few more times but I kept refusing, insisting that nothing hurt. I felt like I was watching everything happen to someone else. A nurse suggested I should have a shower, I had lost a lot of blood and was unable to walk myself to the shower, 2 nurses practically carried me to the shower and then left me there to have some privacy. I think that must have been shift change because nobody came back for me, 45 minutes later I was still in the shower with no towel and no clothes. Hubby ended up drying me off with the robe I had been wearing and carried me back to the bed and covered me up with blankets.
Eventually a new nurse came in, looked at my notes, suggested I try to get some sleep, turned the lights off and left me for another hour. When she came back I told her the bed was soaked in blood and that I had no clothes at all. She asked me if I was wearing a sanitary pad, I said no, I had no underwear, all my clothes had been soaked in blood, she told me that there were fresh bedpads and robes in a drawer on the other side of the room and indicated that I should fix myself up. She also asked me if I wanted to see my baby and then left to go and get her.
My precious little girl was brought to me dressed and in a cot like a ‘normal’ baby. Everything about her was perfect and tiny. Perfect little fingers and toes, a tiny replica of my nose, she even had little eyebrows. I don’t know what I expected really but I was awestruck and how much she looked like a “real” baby. I held her for hours, crying and apologizing. My poor tiny little girl. All I could think of was the fact that my body had failed that precious, perfect tiny girl. My husband couldn’t bring himself to hold her but he sat and held me while we both cried.
The next few hours were mostly spent making decisions I wasn’t ready to make, the nurse who had taken over on shift change was pushy and nosy. She told me I “had to” name my baby on the spot, “had to” decide about a funeral, burial and cremation and told me I “should” send her body away for an autopsy ASAP. She reminded me that 1 in 4 pregnancies end in miscarriage and she told me it just “wasn’t meant to be for me.” Perhaps she was just trying to be helpful, perhaps she just didn’t know what to say but I was furious with her, I felt like she was doing a terrible job of caring for me (she still hadn’t checked any of my basic needs, she had basically told me to change my own bedpads when I was unable to walk and I had been in hospital for over 12 hours when I asked if I could have an orange juice or something and she finally thought to bring me food!). I desperately wanted to go home and I sent my husband to the local shops so that I could leave ASAP. We started referring to the nurse as “Crap Nurse.”
A social worker came to see me while he was gone and spoke to me with much more empathy about the things Crap Nurse had been pushing on me. We decided to name our princess Cora and have her cremated. I refused an autopsy because my instincts told me she was perfect and I didn’t want anyone to touch her tiny body. An obstetrician came and checked over me briefly, gave me the all clear to go home and gave me an appointment to see a professor of obstetrics in 6 weeks’ time. Nobody told me what I could expect for the days that followed.
My milk came in a few days later, my neighbors had a newborn and I heard him cry and suddenly my shirt was soaked in milk. I called the hospital and happened to get Crap Nurse. I explained what was happening and mentioned that I was in quite a bit of pain and she said “Oh no, you were WAY too early for your milk to have come in, you should probably go the GP and get a referral to a breast cancer specialist ASAP!” Of course, my GP confirmed that it WAS just my milk coming in, it was normal and just to leave them alone. It broke my heart to be producing milk with no baby to feed.
6 weeks later we saw the professor to discuss what had happened. I had decided that I needed to make a complaint about the care that I had received during my pregnancy. I told him that I felt like my concerns were not heard or taken seriously from the start. I said that I didn’t blame the hospital for the overall outcome and that at this stage I didn’t intend any legal action but that I didn’t think a lot of things were handled appropriately and that I would really like to have them considered. Once he heard the things that I said, he agreed that it was very concerning and promised to follow up and get back to me.
He told us they had found an infection in my placenta and they were unsure whether cervical incompetence had led to the infection or whether the infection had caused my cervix to dilate early. He said that so far there was nothing to indicate a heightened risk of recurrence. He sent hubby and I for a lot of genetic testing and asked us to come back a few weeks later.
A few weeks later, we saw him again, our genetic results were all clear and he gave us permission to try again as soon as we were ready. He told me that he had raised my concerns with their staff and assured me that measures were being put in place to address the issues. He also asked that I phone him directly as soon as I reached 8 weeks pregnant again so that we could make sure I received extra monitoring etc. for my next pregnancy.
I fell pregnant with another little girl only 13 weeks after we lost our darling Cora, seeing those 2 lines on my pregnancy test was simultaneously the most exciting and terrifying experience of my life. I decided to give the hospital another chance and I am pleased to report that I received exceptional care throughout what was a fairly complicated and terrifying pregnancy with increased anxiety on top of fortnightly cervical monitoring, growth scares, gestational diabetes, bell’s palsy and various other minor issues. The hospital were really great about going the extra mile to put my mind at ease and I felt empowered to push for more information and support whenever I didn’t feel satisfied or comfortable. My little rainbow baby Sienna was born healthy and perfect at 38 weeks almost exactly a year after losing Cora
Nothing in the world will ever erase the hurt of losing a baby, I still ache for my darling girl every single day but I like to think my sweetheart would be proud of me for learning to advocate for myself and for Sienna. I think it’s important to be able to stand up and say “I’m not okay with that and I expect more” and I hope that my journey can help others to find the strength and courage to help us all receive better care.
I hope you valued reading Caitlin's story of her journey to meeting her two beautiful girls, Cora and Sienna. Please leave any comments or questions about Caitlin's story below, or contact me privately as well.
If you are experiencing distress after reading this article, please contact either SANDS (national organisation for pregnancy loss), PANDA (national organisation for maternity mental health support), Beyond Blue (national mental health body, 24/7 support), or read the related articles below).