Over the past few months, I have been thinking a lot about Penny’s birth story. Christmas is approaching and this time last year is when we announced to our families that I was pregnant. We were all holding our breath a little bit because I was still raw from the grief from the miscarriage I had experienced in November. I think I bought at least 6 pregnancy tests because it just seemed too good to be true that I was pregnant again so quickly. It seems like such a distant memory now.
I recently found a group on Facebook of women who also had the HELLP Syndrome, a rare complication of Pre Eclampsia that crept in at the end of my pregnancy. It has been powerful reading these women’s stories and reflecting on the fact that both Penny and I were far luckier than I’d initially realized. It’s also been difficult coming to terms with the idea that if I want to have another child my risk of getting HELLP again, or having other complications, is a reality. I have shared various pieces of the birth story, but I wanted to take the time to put all of the pieces together in one place, as part of my own healing and processing. This is a very personal post, but I am the kind of person that has always been an open book, and I think being more open about our experiences is an important aspect of processing, and also connecting with one another. I think too often when it comes to pregnancy and babies, there is this portrayal by some (and exaggerated hugely in movies and commercials, etc) that everything is just so perfect and magical and easy. Reality for so many women is that it just isn’t. And that’s okay. We are all traveling on different paths and have different lessons to learn. We are not alone as there are so many others who are also struggling.
HELLP Syndrome was named by Dr. Louis Weinstein in 1982 (coincidentally the year that I was born) after its characteristics:
H (hemolysis – break down of red blood cells)
EL (elevated liver enzymes)
LP (low platelet count)
It occurs in an estimated 0.5% – 0.9% of pregnancies.
The global mortality rate of HELLP syndrome moms has been reported to be as high as 25%. There is high risk to the baby’s life as well – abruption of the placenta (placenta prematurely separating from the uterus), placental failure with intrauterine asphyxia (fetus not getting enough oxygen), and extreme prematurity.
Here is my HELLP story…
I had a difficult pregnancy, both physically and emotionally. After suffering a miscarriage, this pregnancy was so fragile to me. I was so incredibly nervous the whole time along. I had thought that after certain milestones, it would get easier and I would stop worrying, but those milestones came and went, and I kept being worried (the magical “12 weeks”, hearing baby’s heartbeat, the 20 week anatomy ultrasound, the due date of the loss I had, the point where I could feel movement)… People didn’t seem to understand this anxiety either. They just kept saying “everything will be fine”. So I tried to hide it. But at night when I was relaxing for bed I would place my hands to my belly filled with such nervous energy until I felt some kicks or movement. I obsessively read about each week of pregnancy learning everything I possibly could and comparing my own physical symptoms to the norm. I couldn’t shake the feeling that something would go wrong. I kept trying though because every ultrasound was normal, lab work was normal, and I was having all of the normal pregnancy symptoms.
Physically, I was quite nauseous early on – generally in the evenings. I threw up a number of times, and just felt generally quite lethargic. As the weeks and months went on and my belly grew, I started to have heartburn that was rather intense, often waking me up at night. Then came the swelling in my feet and hands. Around week 35 of my pregnancy the swelling in my feet and hands got quite severe. My blood pressure was up, though below the requirement for a Pre Eclampsia diagnosis. My urine was checked and there was a bit of protein, but again, not enough for a Pre Eclampsia diagnosis. Around week 38 as my blood pressure crept up a bit higher, my midwife and I discussed the possibility of consulting with an OB, but we felt because I was so far along in my pregnancy, and my lab work was still relatively normal that it made sense to wait a bit and see what my body would do. I had my plans for a natural birth and wanted to avoid induction if I could. It was also the heat of the summer and I was still working full time so she suggested I try to take it easy, put my feet up as much as possible. Most of what I was experiencing were “normal” pregnancy symptoms. But my BP just kept creeping up day by day, and I started having terrible back pain that was way worse at night. I started to think maybe I was having contractions so I started timing them but there was no pattern. I was getting next to no sleep between the back pain, heartburn and frequent peeing, which was leaving me utterly exhausted wondering how I would get through the work of labour when the time came.
My Midwife ordered blood work and a non-stress test (to check for fetal distress) every three days. Every time the baby was fine. Despite this, I felt concerned that something wasn’t right – I got a heartbeat monitor app for my phone and every night checked on her – each time I stopped breathing because I was convinced I wouldn’t be able to find a heartbeat. But every time she was ticking away just fine. She was strong and calm, despite the fact that my body was failing us both. I started having lose stools, more back pain, my swelling got worse and the baby started to drop. My Midwife said labour was just around the corner. So I stopped work a day earlier than planned, packed my hospital bag and parked myself on the sofa, ready to count contractions.
When I went for my next NST the morning of August 27th I felt horrible. I had been up all night with the intense back pain that Tylenol was no longer touching – I thought to myself if this is what contraction pains are like there’s no chance I’ll be able to handle birth without medication. I was nauseous, having green loose stools, and knew in my heart something was really wrong when I vomitted from the pain at 2 a.m. I told my husband that morning I thought I was dying. Told him I didn’t care what they had to do, I wanted them to get my baby out however they had to. I let go of the idea of natural birth. When we got to the hospital and the nurse ran the NST baby was still doing just fine, to my surprise. My BP was a bit higher than it had been. But the nurse had thought they’d be sending us home again to wait some more, she said she didn’t think it would be long before labour started – said she could tell from looking at me. I felt relief. Until a few moments later when my blood work came through. Then time seemed to stop and everything went ridiculously fast. My blood platelets had dropped dangerously low and my liver was in process of failing. The nurse explained to me that both the baby and my lives were in grave danger. Before she had even finished explaining what was happening, she had me in a wheelchair and I was rushed to meet with an OB. On the way, I asked her if I would still be able to labour in a tub. The nurse looked at me with sad eyes and shook her head. I was confused – I had thought wheeling me off meant I was going to be induced. My Midwife arrived very quickly and together she and the OB explained the situation. I cried when I realized what they were telling me: emergency c-section was happening immediately. No natural birth. Not even a vaginal birth. I couldn’t even be awake because I had to be put under general anesthetic due to my platelets being so low. Then the worst part: my husband couldn’t even be in the room during surgery. It broke my heart to realize that our baby would enter the world in the arms of strangers. That my life and my baby’s life were on the line and my husband couldn’t be there to hold my hand. The OB was incredibly compassionate and kind in that moment when the tears were pouring down my cheeks. He slowed down his medical speak and sat down beside me. He told me with such determination that he wanted to give me my beautiful baby girl. Told me he knows this isn’t what I’d planned for. Told me it’s okay to feel sad, and that he was sorry this was happening. But that this was a life or death situation. And we needed to get the baby out as soon as possible. I was rushed into surgery in a room full of people in gowns and masks who were talking way too fast. A very kind British nurse held my hand, and reassured me that everything would be ok and I’d soon get to meet my baby girl, as they intubated me, inserted a catheter and put me under…
I was held in the recovery room for three hours because my blood pressure was very high post op and they wanted to monitor me due to risk of seizures. Those were the longest three hours of my life. Luckily my Midwife stayed with me during the c-section and immediately took the baby for skin to skin time with my husband.
I felt for quite some time that I’d missed out on important bonding time. I felt sad and disconnected from my baby for a while. And was frustrated in the early weeks when she was upset and only my husband could calm her and I couldn’t. I felt like such a failure as a mother. I remember when I finally came to after the surgery and the nurse was telling me about my IV meds, and explaining the button to control the dose, I was floored that I was put on medications I would have never consented to. But there was no choice, they were necessary. I felt like my rights were taken away completely. I was a patient… And had never been one before at all ever. I have spent my career advocating for patients and trying to bring personhood to the medical model. It was a lot to come to terms with and there was very little time to process any of it as suddenly there was a baby in my arms who needed me.
The days we spent in the hospital were challenging. I always thought everything motherhood related would just come instinctually. It never occurred to me that breastfeeding was a skill that both Penny and I would need to learn. Luckily the Lactation Consultant at the hospital and my Midwife were a tremendous help. My blood pressure remained high so they kept us several days and that was stressful and frustrating because we were in a shared room and it was impossible to get any sleep whatsoever. Both Sebastian and I were anxious, exhausted and just wanted to get home.
What a journey it has been. I am so hopelessly in love and delighted with the gifts I have: my little baby’s life, my life, and my incredible husband, who through all of this I have fallen in love with all over again.
It has all been a lot to process. I found talking to my midwife about the experience really helpful. She helped me to put it into words what I was feeling. I cannot say enough good things about midwifery care. The Midwife got to the hospital within five minutes of the blood work results coming in. She stayed with me during surgery, made sure Penny got to Sebastian right afterwards, and took photos for us. The Midwife was also an ENORMOUS support in the days following in terms of help with breastfeeding, emotional support and just helping us to understand everything. The home visits were by far the most positive experience with the health care system I have ever experienced. She answered all of the questions we had – and as first time parents we had a LOT of them. She took her time and even though I knew she was very busy, I never felt that she was rushed. Because my blood pressure remained quite high postpartum, we had some extra home visits, and I also unfortunately ended up readmitted to the hospital 24 hours after I had been discharged. Luckily, thanks to my Midwife’s advocacy efforts, we avoided the emergency room and they admitted us right away to a single room on the maternity floor, where I was able to keep the baby with me so that breastfeeding wasn’t interrupted by the hospitalization.
Two months after the birth, when I was enjoying all of the amazing moments with baby Penny, the Midwife emailed me photos from the birth that she’d taken. I had expected her to take a few cozy shots of my husband and the baby… But I quickly realized she had also taken photos of everything during the c-section. Seeing those photos brought all the trauma back and I burst out in tears. It was hard to see my baby being weighed on a cold metal scale with just a piece of paper under her, screaming and crying intensely, knowing that I wasn’t there to hold her and comfort her afterwards. Seeing all of the blood, all of the medical equipment and all of the gloved medical professionals in the room… It was entirely different from the natural birth I had planned and prepared for. I wanted a calm space, time in a tub, minimal medical interventions…I had imagined in my mind for a long time that moment immediately after birth of cuddling my baby in my arms. Seeing how different it was upset me all over again. But in hindsight, I am glad for those photos because shedding those tears helped me to grieve. I didn’t know I still had grieving to do, but clearly I did…
I have learned that it is okay to cry and feel upset that your experience wasn’t what you wanted it to be. Many people say “the baby is healthy and you’re okay and that’s all that matters”. Those kind of comments really trivialize the experience. Yes, those facts are true. But the reality is that the trauma from the experience is very real, and although grateful that there wasn’t a worse outcome, it is normal to be upset by what happened. We all have visions of what our birth journey will be like and we hold on to those visions for many many years. I’ve known since I was a young child that I wanted to be a mom. When we actually get there and the experience is entirely different from that what we’d expected it’s natural to feel disappointed, frustrated, gipped and sad… It is also heavy to experience a brush with death, and this has made me reevaluate a lot of things in my life. These are feelings that I’m still processing and coming to terms with. I’m also at a stage in life when many of my friends are also having babies, and it’s sometimes hard to hear about their experiences. But I also have discovered in being open about what I’ve been through, many of the people in my life have opened up to me about their own tragedies and struggles – pregnancy losses, challenges with infertility, illness through pregnancy… I feel so honoured that they have shared with me what they have been through, and shared pieces of their wisdom. We can all lean on one another through the hardships in our lives, this is what friendship is about.
Baby Penny came into my life August 27th a happy and calm baby, despite the disturbing conditions of her birth. She is my rainbow baby after my miscarriage. She also happened to arrive in the midst of the worst windstorm the lower mainland has had in many decades. Power was out everywhere and there was absolute chaos. I will never forgot coming home from hospital five days after her birth to no power at our condo. The parkade was pitch black and we carried Penny in her car seat up the stairs in total darkness by the light of our iPhones.
My calm little angel taught me peace within catastrophe, helped me find an immense amount of patience deep within me through her purple crying phase, and is teaching me to play the most important role of my life – motherhood. Thank you for reading our story.
