My story of Pregnancy Loss with Intrahepatic Cholestasis of Pregnancy, and my Rainbow Baby

John Ellis and ICP family

October, 2016.  For my family and me, October, 2016 was such a special month!  I was 5 months pregnant with our second little boy, John Ellis.  We had his gender reveal party a month earlier and were so excited when the ribbons popped out blue! October, 2016 was filled with love and laughter by planning the arrival of John Ellis.  Looking back, I’m not sure how aware I was that October was Pregnancy and Infant Loss Awareness Month. Fast forward to October, 2017, and it is something my family and I know all too well. Sadly, 1 in 4 women experience pregnancy and infant loss, yet it is something that you don’t hear a lot of conversation about. I am so thankful for the awareness brought by Pregnancy and Infant Loss Awareness month as it provides ways to have these conversations and allows families to acknowledge their loss and share their stories.

Pregnancy and Infant month give us another chance to talk about our angel, John Ellis.  John Ellis’ due date was on my birthday, February 8th.  I just knew it was meant to be and we couldn’t wait to meet him!  We were so excited that our oldest son, Baylis, was going to be a big brother.  Everyone was just thrilled! I posted on social media my growing belly as much as possible, posted announcement pictures, gender reveal pictures… you name it!  I was fearless and just knew everything was going to end up perfect… just like it had with Baylis. No pregnancy or health issues, nothing.  Just pure baby bliss.

However, In December, 2016, I developed a fever and sinus infection.  My OB prescribed me Amoxicillin and from there everything changed.  My feet started tingling on the first night that I took the antibiotics. I called my doctor the next day and they changed my medicine to an antibiotic without penicillin.  They assumed I was having an allergic reaction to penicillin.  Unfortunately, the tingling grew to itching and did not stop.  It progressed to severe itching.  I was prescribed several different antihistamines and given a Celestone shot.  Nothing helped.  For two weeks I was in excruciating pain with the itchiness.  My husband, Lucas, found me one-night pacing as I couldn’t sleep from the intense itching that had now moved all over my body.  He found something called Intrahepatic Cholestasis of Pregnancy (ICP) on ICP Care’s website doing an internet search of my symptoms.  It was something we had never heard of before. Never! No one had!  I can’t tell you how many people I told about my itching.  Now I know.  ICP is a pregnancy condition that causes an elevation of bile acids and can lead to stillbirth and infant loss.  This condition’s number one symptom is moderate to severe itching.  I also had dark urine that my doctor and nurses said were normal with the antihistamines, but it was in fact due from ICP.

After learning about Cholestasis of Pregnancy, the next day I asked for a blood test from my Doctor to see if I had Cholestasis, tragically, it was too late.  John Ellis no longer had a heartbeat, and our hearts were broken into a million pieces. John Ellis was born still on January 6, 2017, at 35 weeks gestation. He was beautiful and I am thankful to be his mother.  I know we have an angel looking over us.

In the hospital, I requested to test my blood levels for Cholestasis of Pregnancy (ICP) and it was confirmed that I did have ICP.  ALT’s and AST’s are liver enzymes your body produces. My ALT’s were 194 (normal levels are 12-75) and AST’s 119 (normal levels are 15-37). My levels were scary high!   I was misdiagnosed with an allergic reaction.  It is so terrifying because if ICP was caught it could have been treated and the chances of a healthy outcome would have had a high success rate.  Every day, I was talking to my OB medical team about the symptoms. This high risk pregnancy condition was never on their minds.  That is why it is so important to bring awareness to ICP as it could save a life.

I went back to read something I had written in February, 2017. It is painful to look back at that time as I was so numb from such a tragic and unexpected loss.  Here is what I wrote:

“Frozen.

When asked how I feel the most accurate answer I can give is this – Frozen.  Numb.  Paralyzed. I feel that I am unable to breathe at times.  The loss of an infant is a loss like no other.  All your future hopes and dreams. Changed forever.  The moment you find out you are pregnant you start to plan and imagine what your new life together will be like.  It is traumatic when that changes in an instant.  You feel stuck and not able to make your next move. Yet, I remind myself that I still have so many things to live for, like my husband, Lucas and our four-year-old son, Baylis.  God has blessed our lives with so many things. Family, friends, careers, etc.… Grief is hard. It is like learning to retrain your brain to think and process things.  You have to learn how to keep smiling. Even when you are heartbroken, you must be proactive to find joy and laugh. You have to push through the thick numbness to get to the other side of healing.

Sadness and love. The two happen simultaneously with grief.  Like the sadness is just on the backburner, constantly set on a low setting.  Sometimes the settings are high and start to boil out of control.  Other times they are set on low and allow me to read Baylis a good night story.  But the setting never turns off.  It is always on. Burning and frozen all at the same time.”

That is tough to read now.  It is easy to go back there and has only been 3 ½ years without John Ellis.  However, we continue to push forward and enjoy the little things.  We know he is always with us.

Grief is hard.  After the loss of John Ellis, we went to see a grief counselor, who is now one of our dearest friends.  She told us that your grief is like a suitcase. A suitcase you always have.  You can put it down at times, but you always have to pick it back up.  You can put down the suitcase when needed…. but to process your grief and start healing you must always pick it back up.  This will allow for healing and to work through the sadness.  Embrace the good days and embrace the sad days.  Be honest with yourself and others to know where you are in your grief journey because grief is a journey.  There is no shortcut to feel better. You must put in the hard and draining work of expressing your feelings.  I will say having a strong faith in God saved us and allowed us to continue.

A year after we lost John Ellis, we found out we were pregnant with our rainbow baby. Finally! I couldn’t wait to get pregnant again.  For this pregnancy I was a fierce Mama Bear.  I searched and found the best medical team. I had a team of three doctors.  My OB, High Risk MFM Doctor and GI Doctor.  They tested my blood levels for ICP every two weeks until month 7+ months when they tested blood levels every week.  I never took antibiotics with this pregnancy (and they wouldn’t allow me too) and thank God, I did not get ICP with my third pregnancy.  We delivered another baby boy named Stanton Eli on October 8, 2018.  Words cannot express what we were feeling that day. Genuine joy and thankfulness.  I hope to write another blog post specifically about Pregnancy after Loss (PAL) and Stanton’s and Baylis’ story.

I only had ICP with John Ellis and his purpose is now to bring awareness to the world and share his light. I am proud to partner with ICP Care as a Board Member and am passionate about spreading awareness of Intrahepatic Cholestasis of Pregnancy after losing John Ellis on January 6, 2017, due to an undiagnosed case of Cholestasis of pregnancy.  Once more, taking the antibiotic, amoxicillin, triggered my ICP and my severe itching symptoms were mistreated as an allergic reaction.  Since then, it has been my life’s passion to spread awareness and stop the unnecessary stillbirths or complications from ICP.  Joining this organization is a true honor as I have utilized their resources and support many times.

How to help: Please take the time and send sweet messages to those who have been affected by pregnancy or infant loss.  Say their child’s name.  Support their fundraising events. Share social media posts about pregnancy and infant loss.  These actions really make a difference. Afterall, pregnancy and infant loss affects 1 and 4 women and you never know who is suffering in silence.  Thank you for helping bring awareness to Pregnancy and Infant Loss Awareness Month, as well as ICP Care.  We honor all babies who have left us too soon.

God bless to all of you Mamas in your pregnancy journeys!

Elisabeth Naff, Mississippi

ICP Care Events Coordinator / Board Member

The Naff's