Carole, Texas

No one ever thinks that they are going to be faced with the decision of terminating a much-wanted pregnancy, of deciding when to shut off the life support of their beloved child.  My spouse and I were faced with exactly that decision.  On December 1, 2008, I was thrilled to discover that I was pregnant with my first child.   My husband and I had recently married and decided to start having kids right away.   Four months later, we went in for our regularly scheduled ultrasound at 20 weeks where we were going to find out if we were having a boy or a girl.  Finding out your baby’s sex is easily the most exciting time of any pregnancy and we were ecstatic to discover that we were having a girl.

Unfortunately, that moment was cut short when the OB/GYN also told us that our baby was sick and referred us to the Maternal Fetal Specialist.  Two days later we were given the heartbreaking news that our daughter was not only sick but had a terminal condition,  Hydrops  Fetalis,  in which abnormal amounts of fluid buildup in the body.  Given the early onset of my daughter’s illness, her condition was very grave and we left the Specialist’s office with our choices.  We could wait until she passed, induce my labor or have a Dilation and Extraction.

Knowing that your daughter is dying is heartbreaking.    When you are given the news that there is nothing that can be done to save your baby’s life, it feels like your soul has been ripped apart.  But we had a decision to make.  Even if we decided not to do anything, we were still making a decision and we had a limited amount of time to decide.  There were so many things to consider: Did I want to hold my baby? Did I want to name her?  Did I want to have her baptized?   Where would she be buried?  Would I be able to hold her while she died if she did somehow survive until term?

In the meantime, I couldn’t eat, I couldn’t sleep and I couldn’t leave the house.   Every time that I left the house, someone would comment on my pregnancy.  They asked perfectly normal questions about my due date, the gender and the name.  I answered their questions as nicely as I could and then I would turn around and burst into tears.  So, eventually, I just stopped leaving my house.

I couldn’t eat because my stomach was in knots from the anxiety.   I didn’t know exactly what was going to happen and I didn’t know when it would happen.

And I definitely couldn’t sleep.  I was petrified that my baby was going to die while I was asleep.   I just knew that I was going to wake up one day and discover that she had died at some point during the night.  The idea that I couldn’t be with her and know when she had passed was more than I could bear.

We decided to have my labor induced.   It felt like the best path for our family.   We started making burial arrangements.  We didn’t have a grave plot for her because we never anticipated needing one.  Instead of planning a nursery, I was picking out a headstone for my baby.  Instead of choosing an outfit for her to wear home from the hospital, I was picking out her burial gown.  It was devastating but there was some comfort in the fact that we were moving forward.

Except, we weren’t really moving forward.  Shortly after making our decision to have my labor induced, we were informed that it wasn’t really possible.  My husband worked for a faith-based hospital system at the time so we had their insurance.  As a faith-based organization, they would not allow us to have our labor induced while our daughter still had a heartbeat.   That meant that we were either forced to wait until she passed or agree to have her heart stopped.  After weeks of being crippled by grief and anxiety, I couldn’t imagine waiting any longer.  Our Obstetrician appealed to the Ethics Board at Seton on our behalf but our appeal was denied.

So, we made the decision to have our daughter’s heart stopped              .  On April 8, 2009, we went to the Specialist’s office at 5 p.m.  We took a final look at our baby on the screen, said our goodbyes and her heart was stopped less than an hour later.   My labor was induced that night and she was delivered four years ago on April 9th.   I held her, kissed her, watched her get baptized, told her that I loved her and said good-bye for the last time.

Living without my baby has been the hardest thing that I’ve ever done.  However, I try to honor her and remember her as often as possible.  I have a sketch of her hanging up in my bedroom.  We planted two memorial trees for her, one at our home and one at our church.  And I visit her grave on a regular basis to talk to her, spend time with her and remind her that she is always loved.