The NEC Society is honored to share stories of babies impacted by NEC- this is Hope’s story.

By Hope’s Mom: After over 8 years of trying and many fertility treatments our dreams finally came true and I got pregnant.  The pregnancy was going really well, I had never been happier.  At the start of my 3^rd trimester I got preeclampsia and was hospitalized on bedrest.  This process had not come easy so why would I expect the remainder of my pregnancy to be easy? I would go through anything to take care of Hope – her name came very easy to us, she was our only Hope of becoming parents.

Each day in the hospital the doctors would tell us there is no cure for preeclampsia and recommended delivery. I couldn’t possibly fathom delivering her, she was only 24 weeks along and odds of survival were slim. Every day with the doctors felt like a fight. As my health started to deteriorate they put more and more pressure on us to deliver; I would not do it. We held on for 6 long weeks of hospitalization at which point the doctors said it would be more of a risk to Hope if I did not deliver her. We had made it to 30 weeks, which based on all the information and research we did, she had a great chance of surviving and thriving.

Hope was delivered via C-section on Sept. 28^th 2013, she was beautiful. Hope was in the NICU because she was small and a preemie, but she was doing great. On her 10^th day of life we got a call from the NICU at 2 pm telling us Hope passed her brain scan with flying colors.  We thought we were finally out of the woods and had a sense of relief.

At 8 pm that evening we received another call from the NICU and my heart just sank. When we arrived she was hooked up to tubes and IV’s and she was essentially in a coma. They said she had spit-up some of her milk so they did an x-ray to ensure that no fluid had entered her lungs. What they ended up seeing on the x-ray was a “bubble” on her intestine, indicating NEC. She showed none of the typical signs of NEC, no blood in her stool, no enlarged bluish belly, etc.

She couldn’t possibly die; not after everything we had been through. She was our one and only, God couldn’t possibly be so cruel to take her away…no that thought was impossible. For the next 10 hours we essentially watched Hope slip away. They kept saying that she wasn’t responding to the typical treatment, which wasn’t anything other than giving her antibiotics and taking her food away. They said our last hope was surgery and they supposedly were getting ready to take her into surgery…but we waited and waited and they never did.

I kept praying that God would let her live and just take me instead.  I held her while we slowly watched her heart monitor beep slower and slower and then finally there was nothing. They moved us to another room so we wouldn’t disturb the other parents and babies in the NICU. As I sat in the room holding Hope – I realized this was the first time that I saw her without all of the tubes and cords attached. 2 years later it is still hard to believe our one and only child was taken from us because of this terrible disease called NEC.  A disease that to this day doctors have done very little research on and know very little about.  I can honestly say that NEC has completely ruined our lives.

From the NEC Society: Hope, you will not be forgotten. Babies like Hope are why we are committed to fighting this devastating disease. You can help by joining us or making a financial contribution.

You can read more stories of babies and families impacted by NEC on our NEC Stories page.