When I found out I was pregnant, it was one of the happiest days of my life. We had been trying to get pregnant for a year and a half and nothing had worked. Eventually, IVF did the trick. When we found out we were having twin girls, I will never forget my husband’s reaction. As he watched dozens of pink balloons fly out of a box, he asked, “Where are the blue balloons? Where are the blue balloons? Are they in the car?” We were shocked, but excited, and especially excited to become parents.
Until my anatomy ultrasound, my pregnancy was uneventful. Then, around 24 weeks, the doctors sent me to the local children’s hospital for additional testing. I had never even been to a children’s hospital and did not know what to expect. When we arrived at Children’s Hospital of Philadelphia (CHOP), I underwent an MRI and EKG and we met with multiple specialists. At the end of our 11-hour day there, we received what was then the worst news imaginable, that something was wrong with one of our daughters.
We would not know what was wrong specifically until she was born but the goal was to stay pregnant until at least 34 weeks to give her the best chance possible. Unfortunately, my water broke at 26 weeks, and I was put on bed rest in the hospital. A week later, I gave birth at 27 weeks, which began an uphill battle from the start. Harley came out at 1 lb, 13 oz and Micah was 2 lbs, 2 oz. It was unbelievable to see how small they were and the equipment attached to them.
Four days after they were born, reality set in. We had gone to get lunch and received a call from one of the nurses to return to the room. When we walked in, we saw what seemed like 50 doctors and nurses around Harley. It was at that moment they diagnosed her as having an extremely rare and severe congenital defect seen in less than 0.1 percent of the population: a type IV laryngeal cleft. A laryngeal cleft is a defect in the airway, and without surgery, we were told Harley would not be able to survive.
The doctors said that Harley needed to be 7 lbs to be able to have the surgery, and she encountered many obstacles in her effort to grow. One major obstacle involved her inability to eat normally because she also had something called microgastria, an abnormally small stomach. We were constantly faced with difficult decisions regarding Harley’s care, decisions we would have never imagined we would have to make. When we had walked into that children’s hospital for the first time at 24 weeks, it was as if we were still kids. After that day, we quickly became adults.
Five months after Harley was born, she was able to have the surgery. It was the first time a doctor at CHOP had ever performed this surgery, and it was only the second time in history a baby with her rare airway defect underwent this surgery. The surgery was a risk, but the risk paid off. It was successful. The doctors said what they learned was revolutionary and would save many babies’ lives in the future.
Harley lived for 8 ½ months and passed away of issues unrelated to her airway. She spent her entire life in the CHOP NICU and never came home. When Micah came home at 3 ½ months, it was the happiest day of my life. It was also one of the hardest, leaving Harley at the hospital, knowing I would be bringing Micah back with me the next morning to be there with her. Spending almost every waking moment in the NICU for 8 ½ months, with an extremely sick baby, was something I would not wish upon anybody.
After Harley passed away, I did not know what to do or how to tell people. Somehow, I came up with the idea to raise funds for the CHOP NICU in her memory. I had no idea the response it would receive. Within a week of her passing away, I had raised thousands of dollars beyond my initial goal of raising $5,000. It has been six years since I started fundraising, and there has been almost $200,000 raised for the CHOP NICU specifically in memory of Harley. I also starting fundraising for Children’s Healthcare of Altanta (CHOA) a few years ago and have raised close to $20,000. I always found that helping other families and their babies helped give me a purpose when I so desperately needed one.
Social media has also helped me in a way. It has allowed me to get incredible support from friends and family near and far the past few years. Even today, people reach out to me frequently to discuss a NICU experience or loss. I think one of the ways I have been able to process my whole experience has been by helping others.
When Micah turned five years old, she began asking questions about what happens when someone passes away. She had always known about her twin sister, but these questions seemed more specific. I had told her that Harley was doing all sorts of fun things in the sky while she was doing fun things down here. It gave me the idea to write a children’s book portraying what I envisioned and had described to Micah. I had my children’s book published last year. It is called The Girl Who Lives in the Sky.
The Girl Who Lives in the Sky is about two girls born on the same day, but one goes to live in the sky while the other remains on earth. And even though the girls are not together anymore in life, they’re certainly together in their dreams: from the zoo, to a birthday party, to the candy store, there’s no telling where the girls will go! The Girl Who Lives in the Sky is a colorful, bright, adventurous dream sequence that shows the power of love and connection that continues to exist between two people who are separated far too early. Although the girl who lives in the sky is gone, her presence is still felt and celebrated by those who cherish her memory.
My hope was that this book would help parents discuss the loss of a loved one with young children in a way that was bright and positive, rather than dark and scary like some children’s books that handle the topic of grief. I’ve had tons of people reach out to me to tell me how the book has helped them. Each time that has happened, it has meant so much to me. The book is also meaningful because a portion of the proceeds from each sale go to CHOP and CHOA.
When Harley passed away, I was slowly able to find purpose and meaning but I never moved forward. Although I am extremely grateful for Micah and her younger sister, Riley, I live with the loss of Harley every day. On February 15, 2014, at 6:16 pm, my life changed forever, and from that moment on, I changed too.