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

Finding Purpose After Infant Loss

One month ago today would have been, should have been, my sweet daughter Caitlyn’s sixth birthday.  The Easter season is never easy for us, and ironically, shortly after the holiday, I am a part of this website as a guest blogger.  First, I wanted to share some of my story, and the legacy that grew from it.

On Wednesday night, April 4, 2006, my husband and I went to the nearest hospital in an emergency. I didn’t feel well and knew danger was ahead. Within minutes I was diagnosed with preeclampsia coupled with HELLP Syndrome. At 28 weeks pregnant, we were told we were having our baby that night.  Caitlyn Grace was born at 3:08 a.m. on April 5, 2006 weighing 1lb, 13oz. She was beautiful!  She went straight to NICU, where the best nurses and doctors could care for her. Caitlyn was doing great and was building up on her feeds at a good rate.

Then, on Saturday, April 15, we received a phone call. Caitlyn wasn’t doing well. We thought, “How could this be?”, as I had held her for three hours that day, and she was fine. We were told not to come to the hospital as she would get worse before she got better, but they would be in touch. By 7:30 p.m. (just 30 minutes later), we received another call telling us they thought Caitlyn had necrotizing enterocolitis (NEC) and that we should come to the hospital. We referred to our preemie book regarding NEC, and knew the statistics were against her. When we arrived at the hospital, about ten doctors and nurses were working on Caitlyn. We knew that was not a good sign. Her stomach was dark colored and distended. We were shown the x-ray and saw the gases being released into her body.  They needed to transport her to a different hospital as soon as possible, where surgery could be performed. Once her blood pressure and breathing were stabilized, the transportation happened. The hospital was just two minutes away and part of us hoped once she made it there the worst was over.  We were wrong.

The first doctor who met us there told us the statistics of babies with NEC, and then told us that Caitlyn would probably not make it through the night. Caitlyn had three blood transfusions and went through a series of tests, but nothing worked.  We, along with our families, sat next to her incubator for twelve hours, while she had her eyes open and watched us the whole time. Caitlyn died in my arms on April 16, Easter Sunday, at 9:30 a.m. That day, a part of us was torn away. It was, and is, the saddest day of our lives. We miss her more than most would ever imagine.

As we began to heal and come to terms with her passing, we created a website to help other parents, like us.  At Babies with NEC, parents may share their NEC stories, stay updated on current research and hopefully, find support.  We hope that through our website, and organizations like Hand to Hold, parents find hope again.  This is 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.

Comments

  1. Piperlyne says:

    I gave birth to my identical twins at 27wks in Sept 2010. After a difficult fight against twin to twin Transfusion Syndrome I thought we were safe. At nine days old one of my boys, Eli, was diagnosed with NEC. 36 hours later I held him as he died in my arms. I was blessed that my other son, Nolan, survived his premature birth and is thriving. I am so sorry for your loss. I share your pain.

  2. Elaine, everytime I read your story I am humbled. While the circumstances that led to our meeting were traumatic, I am grateful to know you. In my frantic search for anything about NEC, I found your website and cried so many tears – of sadness and of joy. When we posted Luke’s story on your website, I was so touched when you reached out. Caitlyn’s wish did come true – she introduced the two of us. For that I will always be grateful.

  3. Brittany says:

    I too lost a daughter to NEC. Taryn was born on 11/22/08. She was doing fantastic and then on Christmas eve the hospital called us a told us she wasn’t doing well. We got to the hospital immediately, and were told she had NEC. There were 10 hours between the time she was diagnosed until when she passed away in her daddy’s at 12:14 am on Christmas morning. If it weren’t from my 10 month old son, at the time, we wouldn’t have survived the horrible catastrophie that is losing a child.

  4. I am so sorry for your loss, Elaine. How beautiful that you have chosen to honor Caitlyn’s memory by helping other parents facing NEC.

  5. Thank you Elaine for sharing your story about your sweet little girl, Caitlyn. Most of all thank you for (as I was once told) “not wasting your grief”. I lost my daughter 4 years ago and was told I had a choice to be bitter or to become better. Thank you for being an inspiration to other parents of loss, that while the hurt never disappears, purpose and fulfillment can be found.

    Keira Sorrells
    ED, Zoe Rose Memorial Foundation
    OD, Preemie Parent Alliance

  6. Thank you for sharing your story and helping other families as well. I too had HELLP Syndrome with Eclampsia but at 25+5wks. My beautiful daughter Bailey was born weighing 15oz and lived for 2 days. She would be turning 17 this year. Her life lives on in me as I help other families find peace and hope through encouragement and inspiration.

  7. Elaine,

    Thank you so much for all you do to ensure others have access to information and support. You are an amazing mom and we are so proud to have you write for the Hand to Hold blog! What an inspiration you are to so many!
    Kelli

  8. Danielle Bullock says:

    Amazingly, I didn’t know there were so many people that were in my shoes. My son Israel was born on July 13, 2010 at 24 weeks weighing only 1.5lbs and only 12 in. He had his struggles of course, but after almost 2 months he seemed to be doing extremely well. But then we got the news that he had NEC. They did surgery and basically hoped for the best. Israel had gotten so swollen, that he gained four almost 5 pounds just from the swelling. I was to say the least, broken. There was nothing I could do… My husband and I never felt so hopeless. One week shy of being 2 months old my son passed away in my husbands arms. I was holding him, but as they took his breathing tube out, I broke down and pretty much went into shock at that moment, so my husband took him. My son would have been 2 in 10 days. I thought as time goes on it would get a little easier. But, all I think is “wow, im not even going to get to see my little boy at 2 years old, or 3, 10, 16, 25” I don’t mean to ramble, but i’ve been pretty depressed. My husband is amazing at supporting me. But there’s times I don’t wanna even say anything to anybody just because I don’t want to sound like a “drama queen” always wanting people to feel sorry for me. Because that’s not the case at all! Websites like this are comforting.

  9. I am so sorry for your loss. I lost my beautiful daughter to NEC in 2008. I am praying for you.

  10. Words can not express how deeply touched I am by every ones story. I lost my beautiful daughter Kroylyn Faith after a long hard fight, she was born oct. 25th 2011 and passed jan.6th 2012 born 26weeks 1lb. 15oz. healthy, strong, and full of life. Everything was going as planned when we showed up at the hospital her stomach was dark and extended we demanded a transfer to PCMC. when we arrived she had been put on a vent and days later had surgery removing a foot of her small intestine cause of NEC. After surgery things got worse she had developed sepsis and never could get over it. I held that sweet angel as she took her final breath. I will always treasure every moment I’ve had with her and I known faith is the only thing that got us threw that heartache!

  11. Erin Cadden says:

    I was very touched by your story as our daughter Alexandra Esther passed this Easter 2013. She was born at 26.5 weeks due to preclampsia, promm and had severe sepsis. We were both so infected and i almost lost my life trying to keep her in as i lie in the hospital. She lived on earth with us for 6 weeks and we spent our new life in the nicu hoping and praying everyday she would get better. Her lungs never got better as the continuous use of a oscillating venitllator, pneumonia, sepsis, and whatever infection they could never find. She was such a fighter and a sassy little lady and you knew when she didn’t like something. She never developed nec, but she never did get stable enough to get her heart valve fixed, so that maybe someday her lungs would heal. We knew she was ready and spent a peaceful and beautiful day with her on Easter, allowing her daddy to hold her for the first time and i the second, only 2 days before, was the first time i held her. We took her off life support and she only had 2 breathes remaining before she left us. We will never forget her as she is the angel we watched gain her wings, our first born, the love and light of our life. And oh yes it is hard, painful , and it takes over, but i know and i hope others learn too that they are forever with you.

  12. I lost my son to NEC. I was planing to bring home Ryan and the docs tell me he was really sick. After two surgeries he did not make it and died in our arms. I had HELLP that forced me to have an emergcy c-section. I was really sick, in the hospital for a week and almost died. Two months later lost my son.

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