My ICP Story: Baby Loss, Journey to My Rainbow Baby and Learning to Swim the Waves of Grief
ICP Story Aireen Turner

Laylee Joy made me a mom. She was my first pregnancy, my first daughter, and my first child. It was a lot of firsts with her. The wonder, joy, and excitement of what a mom is. I enjoyed every aspect of being pregnant with her. Unfortunately, Laylee Joy is not here earth side. She is my angel baby who died due to Intrahepatic Cholestasis of Pregnancy. She died at 36 weeks on March 28, 2020; in the midst of the start of the Covid Pandemic in the United States.

My 35 week appointment was cancelled due to Covid. When I called in Tuesday questioning Laylee Joy’s movements, my nurse who I had seen for every appointment said it was normal for babies to have sleepy days, especially being 35 weeks pregnant. The next day, the mild itching started on my hands and feet, then went away by the evening. On Thursday, I started to have a more intense itch, but Laylee Joy was still having the normal movements. Everything seemed fine. On Friday, I started to have the most intense itch on my hands and feet. It was so bad I would rub my feet on the carpet just to get some kind of relief. Her movements had increased greatly that night and we thought she was just being active. Early on Saturday I counted my kicks, and all seemed normal until about 9:00 am. I didn’t feel her move like normal, and I started to feel off. I told my husband that we need to go in.

We got to the hospital at about 11:30. We thought we were having a baby. I could feel the labor increasing. My husband Jeremy was not allowed to come in with me due to precautions for Covid; the hospital was practically on lock down. I went in alone. One of the triage nurses brought me back after waiting 10 minutes to be seen. They brought out the monitor and hooked me up to it. This nurse did everything she could to find a heartbeat, then brought in another nurse. The second nurse looked for a heartbeat. They looked at each other with anguish, but they tried not to let it show. I knew something was wrong. Laylee Joy always had a strong heartbeat. They brought in a third nurse, but she didn’t find anything. They did everything to reassure me and said they would get my OB since she was working at the hospital that day. They brought her in, and tears were streaming down my face. She looked at me and said, “I am so sorry Aireen. There is no heartbeat.” Those words haunt my existence to this day. The third nurse, who ended up being one of my labor and delivery nurses, just held me as I screamed and cried, even though she was not suppose to even hold my hand due to Covid precautions. She held me while I cried. All of this was said and done without Jeremy there.

One of the nurses called my husband and said to come in. He was waiting in the parking structure; he thought we were having a baby. She met him in the lobby, and they rode the elevator in silence. He had no idea what was going on. When he came through the triage doors, he could hear me crying and screaming for him. He ran over to the room and my doctor told him the news, “There’s no heartbeat.” We held each other and cried for a half hour before I was wheeled upstairs. I couldn’t move. I was in complete shock.

I was not diagnosed with ICP until after I delivered Laylee Joy that night at 7:11. They ran tests and confirmed that my bile acids were extremely high. The symptoms started only a few days before we lost her. ICP came on so strong and so fast.

Fast forward to the end of summer and I learned I was pregnant again. I was full of so much joy and fear at the same time. We found out it was another girl and I couldn’t help but feel like I was going to lose this baby too. This time I took every precaution and I did my research! I read just about every single article and resource on ICP Care’s website. I changed doctors and had a team of Maternal Fetal Medicine doctors and a GI doctor who specialized in liver conditions. I also had a therapist I was seeing weekly since losing Laylee Joy. I felt more prepared this time around, and at the same time, I had so much anxiety.

I was diagnosed with ICP at 27+4 weeks. My OB tested me monthly since I came under her care. She took every precaution with me because she too had a stillborn baby and became pregnant less than a year later. If anyone understood me, it was her, and I am so thankful for her. When I was diagnosed I was put on medication right away, and I started to go in for NSTs at 30 weeks. At 33+4 weeks I started to go into early labor. I was hospitalized for nearly 2 weeks and monitored closely. My daughters have the same due date. Trust me, this was not planned. I asked my team of doctors if they were going to induce me at 36 weeks. I was already going into early labor, and I was not comfortable delivering the same day as losing Laylee Joy. They agreed that given my rising bile acids and the early labor that I would be induced at 35 weeks. They gave me steroid shots to help baby’s lungs develop and made me rest during this time.

Our rainbow baby, Laya Jade was born on March 23, 2021 in the same hospital I delivered Laylee Joy. Looking back at pictures and videos after Laya Jade was put on my chest, the relief having a living baby could be seen all over my face. I couldn’t help but feel so much wonder, joy, excitement, and sadness all at the same time. Laylee Joy should be here to be a big sister.

After having Laya Jade there was an opportunity to become an ICP Care Board Member. I wanted to bring support and awareness to ICP in honor of Laylee Joy. I also became an ambassador for ICP Care and have helped start the Ambassador program as well. It is such an honor and privilege to serve as a Board Member and Ambassador for this organization. I want this pregnancy condition to be known and written about in every single hospitals’ “What To Expect” pamphlets. I talk very openly about Laylee Joy, about having a stillborn and having ICP with my daughters.

My mission in life is to bring joy in any way I can and to support other parents who have also lost a baby. When you lose a baby, you join this secret club that no one really should be a part of. I have connected with other moms who also have lost their babies, and it is a support like no other. I often think about these babies with my Laylee Joy, and it brings me comfort to know my girl is not alone. The grief can become overwhelming at times. My therapist has opened my eyes to giving myself grace in every situation. When you are grieving a loss, grief can be like a storm in the ocean. Over time the waves don’t get less rough, rather you become a better swimmer. This last year has taught me a lot about my faith in God and in myself. I have learned to give myself more grace and love my family even more.

During October, I openly talk about having a stillborn as it is Pregnancy and Infant Loss Awareness Month. 1 in 4 pregnant women suffer a loss. During this month I think about Laylee Joy more often. I give a little more in her honor. I speak even more about ICP. I say her name to others. During this month, if you know someone or are someone who has lost a baby, say their name. Send that friend a message of hope and joy. Be there to comfort those who have lost a baby. They may be suffering in silence and are great swimmers in their ocean of grief. Their babies lived and are still so loved! Share some resources about stillbirth, baby loss and pregnancy loss. There are many parents who have gone through a loss and may not be as vocal. These babies still deserve to be remembered and honored.

For resources on ICP and ways to support ICP Care, please visit the links below:

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Have you recently been diagnosed with ICP?

Would you like your personal experience, test results and medical treatment with this rare disease to further the advancement of science? Find out how your diagnosis can help through our Patient Registry.