This October is Pregnancy and Infant Loss Awareness Month share Erin's story to raise awareness and donate to continue our work to help prevent heartbreaking loss.

My story of the death of our first child due to Intrahepatic Cholestasis of Pregnancy

October 2022 was our month of nesting. We had attended our beautiful baby showers for our daughter and could now go through the generous gifts we had been given and determine what essentials were left to purchase before bringing home our first child. Up until this month, our pregnancy had been uncomplicated and low risk: my husband and I had both stayed active for the past 8 months and had really relished our time together growing this little babe. Every change in my body was welcome to some degree (morning sickness, swollen feet, stretch marks, groin pain and an expanding abdomen) as we knew it was all part of the journey to meet our daughter. As she grew larger and we could feel her hiccups and movements, my husband and I grew closer to one another and to this little being. We loved our time in the evening spent counting her movements, playing her songs and chatting with her about names that she liked or disliked. We were blissfully happy and ignorant in our first pregnancy.

At around 35 weeks, I noticed that my palms and soles were quite itchy after my evening bath. I would scrub at them with a towel or bathmat for a few minutes before it would subside and I would go to bed. I googled itchiness in pregnancy and read forums and articles that said that itchiness was common and is likely due to my changing body. I came across the condition called Intrahepatic Cholestasis of Pregnancy but didn’t want to work myself up by going down a rabbit hole so we decided we would mention these symptoms at our appointment with the midwives in a few days. When we did, they immediately sent me for fasted bloodwork (as was the standard in our province for liver function tests) to see what was going on. When the preliminary results came back with elevated liver enzymes, paired with the itchy palms and soles, we were asked to go to the hospital to meet with our team, have an NST and talk with an OB about a delivery plan including early induction based on the bile acid results. We were at 36+4. When it came back the following day at 11, a monitoring schedule was developed with biweekly NSTS, weekly bloodwork and a plan to induce at 38 or 39 weeks. We were told that this disease was “slow moving” and the “risk was low” at the levels I was presenting at.

The following week our NST was unremarkable and our bloodwork was done unfasted, by human error. The evening of 37+3, my husband and I listened to our daughter’s strong heartbeat with our home doppler and counted her strong kicks in the bath before bed. The following morning, we chatted with each other before our midwife appointment and decided we would ask to induce sooner rather than later if there was any risk to our baby. We had everything we needed and we were ready. At our appointment we presented our concerns and were dismissed and said that there was “no risk to baby” and to start natural methods to get my body ready. Minutes later when the doppler was put on my abdomen, we were greeted with silence. Our hell had begun.

Our labour and delivery was chaotic as the majority of our team had never dealt with a stillborn baby or a family experiencing loss at this gestational age. We are grateful for many aspects of our care, but also deeply traumatized by others. Decisions were made by professionals that were not appropriate for us and we should have been included in the conversation. Our daughter, Briar Mica von Poser, was born at 8lbs 3oz on October 20, 2022 after 10.5 hours of labour. She was so incredibly beautiful with a head full of her dad’s auburn curls. Sadly, we only got to spend 3 hours spread out over 2 days with her due to the lack of cooling equipment in our hospital. No amount of time would ever be enough, but three hours was a smack in the face. Her autopsy report would later reveal that she died of a cardiac event as a result of ICP and my high bile acids. The lab work returned the day after her death showing that my bile acids had jumped from 11 to 90 in the span of a week. It should be noted that my itchiness had subsided during this time, which shows that blood chemistry and symptoms do not always match. No specialist has been able to explain to us why our ICP progressed so quickly and why some babies survive much higher bile acids while Briar, who was healthy in all aspects, died. With the high likelihood of ICP recurrence as well as all of these unanswered questions, my husband and I are absolutely terrified of another loss as we are currently pregnant with Briar’s little sister.

In our daughter’s memory, we have made a lot of change. We fundraised and donated five CuddleCots with Briar’s name on them to local hospitals to allow parents like us to spend more time saying hello to their baby before having to say goodbye. We are challenging the provincial healthcare system to decentralize the way they conduct bile acid testing to prevent potentially tragic delays in results based on where people live. We have assembled a document with loss resources and advice for care providers that we are distributing to OBs, doctors, public health nurses, midwives, doulas and anyone else who wants to support bereaved parents. We also created an annual bursary to send an underprivileged child to attend a week-long summer pony camp in Briar’s name. We have been giving friends and family members rocks with her name on them to take around the world and show her beautiful spaces and we have a globe to mark all of the places she has been. We speak about her all of the time and are working to destigmatize pregnancy and infant loss while also raising awareness for ICP.

If you are reading this and know someone who has lost a child at any stage for any reason (miscarriage, stillbirth, TFMR, infant death) no matter how recently or long ago, please ask them about their baby and use their name if they have one. It means a lot when someone reaches out and says that something reminded them of Briar or they saw something they think Briar would have liked. Additionally, if you know someone who is itchy during pregnancy and/or diagnosed with ICP, please tell them to get unfasted bloodwork done to determine their liver function and bile acid levels. This disease is usually slow moving and there is usually low risk associated with it, but it is also poorly understood and it can have fatal consequences. A small risk of stillbirth is still a risk of your world falling apart. If your care provider downplays the significance of an ICP diagnosis, push and advocate for the health of you and your baby. Above all else, don’t ignore the itch. stillbirth is a risk.

"Following Briar's death, my husband and I were able to learn so much about ICP and the likelihood of recurrence in future pregnancies through ICP Care's resources on the website and social media platforms. We are grateful for the support group network provided through this 501c3 nonprofit and hope that by sharing our story of heartbreak and loss, we can add our voices to the volume pushing for change in care and recognition of the disease."

With love and support,

Briar's Mom

The ICP Care family honors and remembers all of the precious babies lost, including our ICP Care team members: Donna’s son Jorden, Amparo’s son Kian, Elisabeth’s son John Ellis, Jenna's son Beau and Aireen’s daughter Laylee Joy.Read about ICP Care 501c3 Impact here

October Pregnancy & Infant Loss Awareness Month

By ICP CARE CORP

October Pregnancy & Infant Loss Awareness Month

My story of the loss of our first child due to Intrahepatic Cholestasis of Pregnancy