Hailey's Story

Our lives were shattered on January 3, 2003 with the unexpected death of our first baby, Hailey. Never did we imagine that the day we would welcome her into the world would also be the day she would pass away.

During my first pregnancy, I developed a very severe case of HELLP Syndrome (a life-threatening complication and variant of pre-eclampsia) suddenly and without the typical warning signs (www.hellpsyndrome.org). I knew the serious effects of this illness since my sister suffered from it just two years before at 28 weeks, but we had no idea it would strike us as early as it did. At 21 weeks, I began to feel intense pains centered under my sternum. Since these pains came and went, I dismissed them as gas. A few days later, the pain was so excruciating that it was hard to just breathe. I could not get comfortable sitting, standing or lying down. Then, I knew something was wrong. My doctor advised me to get to the hospital that night for some tests. Within hours of admission to the hospital, our world came crashing down.

Although an ultrasound revealed that Hailey was perfectly healthy, several tests confirmed that I had a severe case of HELLP Syndrome. This horrible illness threatened the lives of both Hailey and me. My liver enzymes levels went through the roof and my platelet levels were extremely low and falling fast. In what seemed like one quick breath, my doctor explained that in order to save my life, Hailey (at just 21 weeks) had to be delivered as soon as possible by an emergency c-section and that there was no chance for her survival. I also heard the words “general anesthesia” and “bleed to death.” As my doctor and the nurses rushed around to prepare for surgery, a flood of tears poured from my eyes. A day in which I thought I would be poked and prodded for a couple of hours then released turned into an admission, emergency surgery, and death…a nightmare come true!

In complete shock and devastation from this news, Isaac and I were then bombarded with questions which nothing could prepare any expecting parents for at such an early stage of pregnancy: Would you like to hold your baby after she is delivered although she isn’t expected to live long? Would you like your baby to be baptized? What name would you like to give your baby? Would you like to speak with a priest? Would you like to make the burial arrangements or would you like the hospital to handle them? The tears wouldn’t stop.

Amidst this nightmare, we found a guardian angel in our nurse, Jeanne. She went to great lengths to comfort my family and to take care of Isaac and me. We were completely devastated and could not think clearly. We did not know how to respond to these questions. Jeanne held my hand and guided us through it. She gave us such great advice for which we can never repay her, especially when it came to holding Hailey. In my condition, I struggled with this decision, not knowing if I could handle holding Hailey then letting her go. We didn’t know how long Hailey would live. Jeanne did. She knew that I would not awake in time to see Hailey alive, and rather than cripple us further with this knowledge, she suggested that I hold Hailey. It was the best decision I ever made and had I chosen differently, I would have regretted it forever.

Hailey was born at 21 weeks and weighed only 12 ounces. She survived for only a few minutes, clinging to life. Isaac got to hold Hailey and while resting comfortably in his arms, Hailey took her last few breaths then passed away. I never got the chance to experience Hailey’s birth or to see or hold Hailey while she was alive because I was unconscious, recovering from general anesthesia. After I finally awoke, Jeanne wheeled Hailey’s bassinet into my room and handed Hailey to me, swaddled in a beautiful baby blanket. Sobbing uncontrollably, I held my deceased daughter so tight and close to my heart and just savored the moment. For this, I am forever grateful to Jeanne.

The anguish I felt handing Hailey back to Jeanne and knowing she was never coming home was indescribable. The guilt of thinking I caused the death of our beautiful and healthy baby girl consumed me. Thoughts kept running through my mind of what I had done wrong, what I didn’t do, what I could’ve done… I cried endlessly when I was discharged from the hospital and left with the effects of a c-section but not our baby girl. As we left, Jeanne gave me Hailey’s tiny hospital bracelets and hat and the pictures she took of Hailey when she was born. I clung to them for dear life all the way home.

The days and nights that followed were incredibly long and hard. Eventually, with the love, support and patience of our family, friends and a local bereavement group, we got on a path of healing. On my actual due date, Isaac and I held a beautiful memorial service at the beach for Hailey. Our priest said a few prayers, we read a few poems and threw red roses into the ocean. It was there that we gave Hailey her name. Like Haley’s Comet, Hailey’s presence on earth was brief but she left an unforgettable mark on our lives. “Hailey” was the perfect name for her. There is not a day that goes by that we don’t think of Hailey or speak to her. She is always in our hearts!

Last year, as we approached the fifth anniversary of Hailey’s death, our family and dearest friends, David and Suzanne Decina, gave us the surprise of a lifetime. They had been secretly working together for months on a project to create a foundation to remember Hailey, to pay tribute to all of our NICU babies, and to help other families who have to live through similar experiences. They named it “Hailey’s Hope Foundation” in memory of Hailey. This touched our hearts so profoundly and we can’t thank them enough. There is truly no better way to celebrate Hailey and to cherish her memory.

Today, Hailey has a younger sister, Alence, and two younger brothers, Jake and Kaden, and they spent a combined 16 weeks in the NICU. When her sister and brothers get older, I will tell them how truly heroic their big sister Hailey was.