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Amanda

Mom to Ethan

September 23, 2009 – September 25, 2009

Waynesville, Ohio

I became a parent in the fall of 2009. The day held all of the joy and celebration I had anticipated, but equally present were the unwelcome shadows of sorrow and dread. My son was born with a Neural Tube Defect (NTD) called an encephalocele that was diagnosed in utero. My husband, Derek, and I were offered the chance to terminate the pregnancy at the time, but ending our child’s life was a choice we were unwilling to make. Instead, we knew that big things were in store for our tiny new arrival.

The months between Ethan’s diagnosis and birth were spent planning and praying.  We met with a perinatal hospice counselor who helped us develop a birth plan, and we met with our minister, who helped us find hope in the darkness that had settled over our lives. To find strength and comfort, I read through all 150 Psalms repeatedly, relating to their bipolar emotions, from anguish to jubilation, in a way I never had before. I was heartbroken and grief-stricken, but grateful for the new life growing within me, and confident that God would make something beautiful out of our loss.

When September 23 arrived, and Ethan finally made his appearance, I was overwhelmed with the love and wonder that is universal to motherhood. I admired his tiny fingers and toes, and I kissed his velvety pink cheeks. My husband, too, was over the moon with this miniature human who filled our hearts so completely. We welcomed many, many visitors, and proudly introduced Ethan to grandparents, great grandparents, aunts, uncles, cousins and friends. He lived for two and a half days, and during that time he was surrounded by nothing by love and joy. He impacted many lives during his brief existence, from the hospital staff, to strangers who heard about our story and prayed on our behalf.

Our rainbow baby, Tyler, was born almost exactly two years after Ethan. We now celebrate both birthdays the same week every year. We all miss Ethan greatly, and we realize that there is a hole in our family that only he could fill. We are thankful, though, that he is part of our family. Our time with him was a gift unlike anything else on earth, and he changed our lives for the better.

[Read more…]

http://facesofloss.com/2016/10/8364.html

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Mariko

Mom to Hitomi Keimiko

3/26/15 – 6/14/15

Daytona Beach, Florida

My daughter Hitomi was born on 26 March 2015 and she had encephalocele with microcephaly. It’s a very rare birth defect. Basically, before I even knew I was pregnant, when her body was forming, her skull bones didn’t close properly in the back of her head, leaving a small hole. It was covered by skin, so we were lucky there, but her brain cells leaked out of the hole and into the skin and started to overproduce cerebral spinal fluid which stretched the skin to form a large sac behind her head. As she grew, her head growth and brain growth started to fall behind and there were signs of abnormal brain tissue outside the skull, but it looked like all the functioning tissue was sitting inside the skull but just smaller. [Read more…]

http://facesofloss.com/2015/08/7843.html

Pam
Mommy to Gavin James
Born and became an Angel on March 24th, 2008
Dallas, Texas
I have always heard you never experience a greater love for another human being until you experience the feeling of carrying a child inside of you. In my case, that joy was great but the grief that came all too soon overshadowed any joy I had. 

[Read more…]

http://facesofloss.com/2010/11/582.html

Catherine
Mom to August John
Died Just Before Birth on January 12th, 2010
Austin, Texas
I was 41 weeks and three days pregnant with my first child when I finally went into labor on Monday, January 11, 2010. I was so excited. My pregnancy had been perfect, and ever since the 40-week mark, my husband and I had been hoping and waiting (and kind of going crazy), just wishing for our baby to be born so we could begin the much-anticipated next part of our lives: raising our kid. (We had decided not to find out the baby’s sex; we wanted to be surprised.) 


[Read more…]

http://facesofloss.com/2010/10/408.html

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