Mom to Victoria Joy

Born December 28th, 2009 at 36w 1d, survived only about 2 hours

Bronx, NY 

I was 12 weeks when I had my first sonogram appointment. Most people go to their first appointment excited, not imagining something may be wrong with their baby.  The technician pretty much immediately found something wrong with my baby, specifically the tummy.  They measured the nuchal fold and everything else which looked fine.  They weren’t sure if it was omphalocele or gastroschisis.  They explained the difference and that they would be sending me for more tests and ultrasounds, etc.  I was devastated that something was wrong with my little girl.  I was the last patient to leave the office and I just didn’t know what to do but cry.

I was always at the doctors for some kind of sonogram, blood work, etc.  I did genetic testing and everything came out normal.  I did an amnio which didn’t turn out well.  The cells they took didn’t grow.  So I did the CVS which was extremely painful and I was so afraid I was going to miscarry.  The CVS turned out normal and it was confirmed the baby was a girl.  I always knew from the beginning the baby was a girl, I don’t know why, I just did.  And I also knew she’d turn out to look just like me but with dark hair (and she did)!!  I did many fetal echo’s, all turning out normal.  I met with specialists and surgeons.  After she was born, they said she was going to be at another hospital, because the hospital I was going to deliver at wasn’t a children’s hospital.  So we met many people from 2 hospitals, all who seemed very caring and knowledgeable. Her omphalocele was considered a giant omphalocele and I later learned, it was bigger than her whole abdomen.

So Monday, December 28, 2009, I went for my weekly sonogram and they told me she had fluid around her heart.  I had to have an emergency C-section pronto!  I was in shock-I was only 36 weeks and 1 day.  I knew I was going to have her early but this was just too early.  I wasnt prepared, mentally or physically.  I didn’t have my bag packed yet, didn’t think I needed to.  I didn’t understand how from one week to the next things changed so drastically.

From all my research, I knew I was probably going to have a C-section.  My first-born son (now 10) was natural with no drugs.  So I was very scared and I didn’t know what to expect.  I had the epidural and just waited to see my princess.  They showed me her for a second before sweeping her off to the NICU.  She was beautiful and I was so happy that I didn’t even think of the omphalocele.  I never did see the omphalocele at all.

While my Victoria Joy was in the NICU, little did I know, trying to hang on, they stitched me up and brought me to a recovery area.  Shortly after, my doctor came in and her face was looking weird.  She told me the baby was not doing good and they were working on her.  Her lungs were very very small and she had a lot of complications from the omphalocele.  My blood pressure went sky-high, I was hyperventilating and freaking out.  I couldn’t believe what was happening.  I had no idea the worst case scenario was happening.  They rushed me from recovery through a special elevator to the NICU where they cleared everyone out except the doctors who were trying to save her life.  They were doing CPR and said they couldn’t get her liver to stop bleeding and all I could do was just lay in the bed screaming and crying not fully understanding what was going on.

She only lived about 2 hours.  I was able to hold her as long as I wanted to in the hospital and they took some pictures.  She was so beautiful and looked like a true angel.  She was wrapped up a blanket and they told me not to unwrap her so I never did.  I never saw the defect that ultimately took my angel’s life. I saw her little hands and tiny feet and all I knew is that she was perfect.  She looked just like I had imagined.

Social workers and grief people and every doctor and nurse came in to see us.  I just wanted to be left alone.  It was all over.  I left the hospital after 5 days without my daughter but with the scars that she was here.

I had a very small funeral for her and she looked like a porcelain doll in her little white dress and purple headband.

Although my Victoria Joy was here only for a short time, she forever lives on with me.  There is not one single second that goes by that I do not think of my sweet baby girl.

You can contact Shannon at

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  1. Shannon, I am so sorry for the loss of your precious Victoria. I have said a prayer for you that God would fill you with his joy and comfort, and that you would hold your daughter again in heaven.

  2. I’m so very sorry for your loss. I lost my Corbin at three months old to heart defects brought on by Williams Syndrome. Sending prayers for peace and love.

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