Hand to Hold's Official Blog: Written by Parents for Parents

Using the Internet To Heal From a NICU Stay

CaitlynWhen Caitlyn passed away at twelve-days-old our world shattered. Lost, alone, angry, broken and a feeling of being hollow was all I felt. My husband and I were sharing the grieving so it was unbearable to share our sadness with each other, it was so raw and too deep.

I did go to therapy, once. I felt I stepped backwards and in the session never knew how to stop crying.

My memories are dark around the time of losing Caitlyn so I am not sure of the timings of some events. However it wasn’t too long when I believed it was Caitlyn’s wish to create a website – a place where we could share our story and help others by doing so. Caitlyn passed away from a rare disease called necrotizing enterocolitis (NEC) and there was little information to be found on the Internet.

The creation of Babies with NEC launched with our story and research from the doctor that performed Caitlyn’s autopsy and continues his research full-time today on NEC. It also had other research and web links. Today, we have hundreds of stories that have been submitted and it has grown into a network where parents can communicate on the loss, the current NEC fight of babies and those with children surviving after NEC. I also update the site with new research as it happens.

With every story submission, over the last six years, I talk to every person on a personal level, helping them. Some ongoing through the pain, guilt, through trying to get pregnant again, during pregnancy, after another baby is born, whatever they need. I help. Helping them and my website is my ongoing therapy. My survival. I believe this is why it was Caitlyn’s wish.

Elaine Jones About Elaine Jones

Elaine Jones (Canada) gave birth to a beautiful daughter, Caitlyn, on April 5, 2006. She was born at 28 weeks due to severe preeclampsia coupled with HELLP Syndrome. She contracted NEC and on the morning of April 16, Easter Sunday, Elaine held Caitlyn in her arms as she passed from this life to the next. Life changed forever. A year later, Elaine created Babies with NEC, a website to help parents, like her, share their story and network together. She personally contacts every parent and finds therapy in helping them. Elaine is the proud mom of two other children, Zoe and Phoenix. You can also contact her on Facebook.


  1. Dear Elaine,

    Thank you so much for your blog post and for all you do for families experiencing NEC. You are such a blessing to so many!


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