Jessica Koenig, Anencephaly, Birth Stories, Twins, Giving Birth To Twins

Jessica Koenig, Anencephaly

I Carried My Dying Twin to Term -- Even Though I Knew She'd Be Born Without a Brain

I Carried My Dying Twin to Term -- Even Though I Knew She'd Be Born Without a Brain

10.12.2019

I Carried My Dying Twin to Term -- Even Though I Knew She'd Be Born Without a Brain

Mom Jessica Koenig shares the story of how she lost her daughter Camille to anencephaly.

I cried happy tears and called my best friend to tell her the news -- I had to tell someone right away but wanted to tell Matt in a special way. My first pregnancy, I wanted Blizzards all the time so I went to DQ and got him a gift card and wrote a note:"I know this seems like a nice gift for you, but you’re going to need it for all of the Blizzards you’ll be getting me for the next 9 months! You’re going to be a Daddy again!!" When he got home from work that night, after Hannah went to bed, I gave him the gift card; he was so elated.

When I was about six weeks, we decided to tell her. We got her an"I’m a Big Sister" book and let her open it when my mom was in town. She read the title and just looked at me, confused. She said,"Nuh uh, I’m not a big sister?!" I said,"Yes, you are! I’m pregnant!" She said"No, you’re not! You don’t have a pregnant belly!" I explained that it takes time for a belly to grow and she started to understand and got so excited. My mom was crying, so happy to see Hannah realize that she was going to be a big sister.

My mom had been texting and calling all day wanting to hear about the appointment. By this point, she was getting worried. I called her from the bathroom, where I was hiding from Hannah, sobbing."Is everything OK?," mom asked."No," I simply replied. I couldn’t tell her what was going on, but I told her Camille wouldn’t live and we cried together. That first night, I didn’t sleep a wink -- I researched, and cried, and researched more and thought and wept. By some harsh twist of fate, this night was also the first night I felt either baby kick hard enough to feel on the outside and it was Camille; like she was telling me she’s still here.

She gave me hope that I would be able find the joy in the rest of Camille’s short life. It was nearly impossible to think that we will be having a child who we know will die before, during or directly after birth. I couldn’t wrap my mind around how to embrace the joys of pregnancy or even imagine enjoying Cameron at this point. I felt robbed; I wanted another baby girl, I wanted Hannah to have a baby sister to teach dress up, makeup and barbies, I wanted twins (I’d had a terrible pregnancy -- I want to experience the joys of twins, too!).

A few days later, I wrote a letter that we shared with our family.

What we want to share with you is going to be the most difficult thing we’ve been through, separately and as a family; but we will need the support of our loved ones over the next days, weeks, months, and probably years. We were told our precious girl has a terminal birth defect and there is no cure; the only care that is provided is to give comfort during what will be her very short life.

We’d been seeing a specialist bi-weekly since we got the diagnosis. At 36 weeks and 6 days, my blood pressure jumped up. The doctor came in."How do you feel about giving birth tomorrow?" I was so terrified, not ready to lose my baby girl; but also excited to meet them both and hold them in my arms. We were told to expect Camille to pass within minutes of birth, if she survived the birth. We went in for a C-section at 7:00 on May 24. Cameron was out at 10:00 on the dot, followed by Camille by one minute. They brought her to me almost immediately. When she first came out, she was almost grey. My doctor knew how important it was for me to have Hannah meet her, so she called out to a nurse to go get my mom and Hannah; we thought we were losing her.

I woke up at 5:24 that morning and went to check on her, in Matt’s arms, and she was gone.

She was too small to be an organ donor, but Mid-West Transplant honored her with a plaque anyway, which was really touching.

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