Losing Gracie

Diagnosis: Spina Bifida and hydrocephalus

By Gracie's Mom

My husband and I had been married for 3 years and we decided we were ready to be parents. On the morning of April 1st, 2012, I woke up in the morning and just felt that I was finally pregnant. I took a test and my happiness took my breath away. I went to the computer room, hugged my husband around the neck and said, "I'm pregnant." I will never forget the pure elation in my husband's voice when he turned to me and said, "REALLY?!"

My baby was going to be the first grandchild for both sides of our families and the first baby in years so there's no explaining the anticipation and happiness surrounding our little one.

I had a very difficult pregnancy. I was vomiting so much that I had to be hospitalized for dehydration and I was eating less than 700 calories a day because my appetite was nonexistent. My doctors thought nothing of it and kept telling me it would pass. I couldn't gain weight and had diarrhea which was another thing that only I seemed worried about so I thought in time I would gain weight just like the doctor said. Little did know I was experiencing clear signs of folic acid deficiency,* but those "clear" signs can be easily taken for common pregnancy ailments.

At 10 weeks we had our first ultrasound and I was amazed by my little baby moving around in my belly and hearing the hearty little heartbeat. I was so taken back by the fact that there was a real baby growing inside me. I was so happy to be pregnant and instantly in love, but I felt unhealthy and weak; I just felt like something was off, but I kept being reassured that everything was fine.

At about 18 1/2 weeks we had our second ultrasound to find out the sex. We were absolutely elated to find out we were having a little girl and planned to name her after my mother. A few minutes into the ultrasound the tech stopped talking to us and kept focusing on the same parts of the baby. At the very end she printed some pictures and left very quickly with them. I had an immediate horrible feeling, but my husband said it was nothing. The nurse came in and I was told that the baby possibly had spina bifida and hydrocephalus. I didn't know exactly what either of those were, but I knew they were bad.

We were sent to see a specialist the next day where he confirmed our precious girl had spina bifida, hydrocephalus and other brain deformities. He told us we had 2 choices: go full term and risk her problems getting worse, especially in her brain, and prepare for the struggles she would immediately be faced with, or terminate. I couldn't believe he would even offer that as a suggestion! We were in love with our little girl, there's no way I could end those little kicks I felt.

My husband and I went home and cried for hours. When we finally caught our breath we had come to the same conclusion. We couldn’t trap our precious baby in a body and a mind that wouldn't serve her. The pain she would be in and the surgeries she would go through throughout her life is something I had to save her from. I would have loved and taken care of her in any shape she was in, but the easy decision was to selfishly keep her to fulfill my wish to be with her and be her mother. The hard decision was to send this wonderful little being back to God. I am not a terribly religious person, but I hope that my daughter will forgive me one day and that God understands.

A week after finding out the prognosis we had to drive 8 hours to a place that did the procedure so late into pregnancy (I was 19 weeks 5 days the day my baby passed away). It was the absolute worst thing I have ever gone through in my life, but it's not me I ever worried about, it was my girl. Was she going to suffer? Was she going to be hurt? I had some sort of peace knowing she died very quickly. I was so thankful that I was able to be put to sleep when my baby girl's body met the light.

I realized that my husband and I were the extreme minority with our reasoning when I wanted to donate her to science so she might be able to help find a cure or a sure cause and the clinic's rep had never had that request. After finding out that was illegal, we wanted to have her cremated so we could bury her with family and that was another request they had never heard. This clinic was specifically for termination from 12-24 weeks... how could you not be in love with your child at that point?

I know that we did the right thing for our baby and I wanted to share my story because I feel alone in my decision. "Unwanted" couldn't be farther from the truth. Now my doctors are going to take me seriously as I will be considered "high risk" the next time I get pregnant. My baby girl has become the savior of my future children, but I feel so much anger toward those who were supposed to take care of us, but instead pushed me aside. I even went so far as to meet with an insurance representative to ask them to please cover the blood screen for spina bifida and down syndrome, but I was specifically told I was "too young and healthy. You have nothing to worry about."

It has been 5 days since my little Angel's passing and I am starting to slip into a dark place. I can't help, but feel like I failed my little girl. I am absolutely haunted by the very second my little girl died. I was very medicated, but I was aware of everything. I heard the nurse say "done" and I looked at her and asked with tears dripping down my face, "Is she gone?" The nurse touched my shoulder and said, "Yes, honey. She's gone." This moment is on replay over and over; the moment I could have stopped it all, but didn't.

I wrote these two poems two days after those little kicks stopped inside my tummy. I miss you Gracie; with every fiber of my being, mommy misses you.

"Your Song"

I sang you to sleep with a song that only you could hear;
for my heart was beating just for you, a rhythm only for your ear.

"Losing Gracie"

The sense of loss I feel for you could fill a great divide;
this isn't a nightmare I'll awake from,
I know because I've tried and tried and tried.

*Editor's Note: If you would like more information on
Folic Acid Deficiency, or Folic acid and birth defect prevention
please see these articles:

Folate deficiency

Prevention of birth defects with folic acid (folate)


Books on Loss and Grief

Our Heartbreaking Choices: Forty-Six Women Share Their Stories of Interrupting a Much-Wanted Pregnancy

The Dive :: A Memoir

A Time to Decide a Time to Heal: For Parents Making Difficult Decisions About Babies They Love

Precious Lives Painful Choices: A Prenatal Decision-Making Guide

Sunshine After the Storm: A Survival Guide for the Grieving Mother

Empty Cradle, Broken Heart, Revised Edition: Surviving the Death of Your Baby

Empty Arms: Coping With Miscarriage, Stillbirth and Infant Death

A Silent Sorrow: Pregnancy Loss

Unspeakable Losses: Healing From Miscarriage, Abortion, And Other Pregnancy Loss

Surviving Pregnancy Loss: A Complete Sourcebook for Women and Their Families

Difficult Decisions: For Families Whose Unborn Baby Has a Serious Problem

Books for Fathers, Family, Children and Friends

Couple Communication After a Baby Dies: Differing Perspectives

For Better or Worse: For Couples Whose Child Has Died

How to Say it When You Don't Know What to Say: The Right Words For Difficult Times

A Guide For Fathers: When A Baby Dies

When Your Friend's Child Dies: A Guide to Being a Thoughtful and Caring Friend

When Pregnancy Fails: Families Coping with Miscarriage, Stillbirth, and Infant Death

What You Can Say When You Don't Know What to Say: Reaching Out to Those Who Hurt

Books about Trying Again and Pregnancy after Loss

Journeys: Stories of Pregnancy After Loss

Trying Again: A Guide to Pregnancy After Miscarriage, Stillbirth, and Infant Loss

Pregnancy After a Loss: A Guide to Pregnancy After a Miscarriage, Stillbirth, or Infant Death