My name is Dana Southworth-Douglass and I am a member of a very exclusive club. In order to join our club, you must bury one of your children. Whether your child is stillborn, succumbs to an illness, or drowns, the outcome is the same. Unbearable, heartbreaking grief. I had the awful advantage of receiving my child's death sentence way before her actual death. You see, my daughter was diagnosed in utero with a fatal birth defect. Our family became very involved with the world of holoprosencephaly (HPE) over the last few years. HPE is a malformation of the brain in which it fails to grow and divide into the left and right cerebral hemispheres. Depending on the severity of the defect, children may live only a few minutes, to a few years, with multiple disabilities. My daughter had the most severe form of this condition. Upon learning of this tragedy, I reached out to a woman I had met while working as a couplet care nurse at Maryvale Hospital . She came in to teach the nurses how to improve the care for our patients facing stillbirth. She had started a foundation for grieving parents, as she had lost her own daughter in 1994. She called it the MISS Foundation.
With the support of MISS, my daughter and I fought for her life. She survived for 3 ½ years, much to the amazement of the medical community. Our story is not easy to tell, or I am sure, easy to hear. There were many difficult decisions to be made along the way. There is no happy ending. There is currently neither cure nor prevention of holoprosencephaly; but researchers are learning more about it everyday. Our motto is “HPE is one letter short of ‘hope'. For hundreds of families each year, their dream of having a perfect child is crushed by this birth defect. However, I still hope for many things. As our life together progressed, my hopes had to be adjusted and changed. But always, I held onto hope. The human spirit must have something to hope for, else it would wither away. I hope now, that by sharing our story, those who follow us may find the strength to make the hard decisions. That they may be inspired by her smile, and her ability to survive HPE for 1,215 days. This is our story.
I'll never forget the day. It was the day that changed my life forever. It was April 4 th, 2000, a Wednesday, around 3pm. The genetic counselor told us not to worry. She had seen so many false positives before, and we had nothing in our history to indicate a genetic problem. And yet, the ultrasound showed something very, very serious had gone wrong. Our baby had a malformation of the brain and chances of survival were not good. The doctor had no hope to offer to us. So we did what we had to do. We created our own hope. Back then, more than 4 years ago, we only hoped that she would survive the pregnancy. That we could hold her and kiss her before she died. Our hopes were granted. We were given 3 ½ years with our precious child, more than we ever dreamed of back on the examining table. Never did we give up hopes on her, this child that defied the odds. As her condition changed, we simply changed what we hoped for. We hoped we could take her home. We hoped she would survive if given the right medications. We hoped her shunt surgery would not collapse her skull. We hoped she could see. We hoped that we could provide her with what she needed to reach her maximum potential. There were many medical challenges to keeping her alive. She endured five surgeries, and twenty-three hospital stays. We considered Phoenix Children's Hospital our home away from home, and the staff like family. She was fed through a tube attached to her stomach. She had two shunts placed in her skull to drain the excess fluid produced by hydrocephalus. She needed several artificial hormones to replace those not produced by her tiny brain. In all, I gave her 14 medications each day. She took it all with a big smile and a laugh. She had the most amazing personality. It was as if her missing brain was replaced with extra love!
My daughter was the sweetest, most loving child you could ever meet. She was so happy to be alive! I think that she chose us because she knew we would take care of her. I think she was sent here to be our teacher. While she could literally do nothing for herself, not even swallow food, she did so much for the people around her. She was the ultimate ‘character building' experience. You could not know her and be unaffected by her story of survival. She caused people to re-think their value systems. She inspired people to better themselves, to not give up hope . Her days spent on earth were a celebration of life! As handicapped as she was – she was still the happiest person I've ever known. She absolutely glowed from within. People were drawn to her. One look into her twinkling eyes, one flash of her beautiful smile, and people were hooked. She had no worries about her future, no concerns about her past. She simply showed people love, the unconditional love which we all crave. She was such a blessing to us.
I call her my butterfly now. I collect butterfly quotes. I have decorated her website with pictures of butterflies. I am so glad that I didn't miss out on this experience. “Don't miss out on a blessing because it isn't packaged the way you expected.” I don't know who wrote it, but it is my favorite. I learned so much from her. I learned that your life can be changed in a matter of minutes, and that you can keep going long after you think you can't. Grief has been very humbling for me. I am weakened in my sorrow. I hope soon to arrive at the place where I can think of her and not cry, think of her and remember how she brightened our world, and taught us all how to love.
One of the ways in which I am healing from her death is through the use of The Kindness Project. This project was started by Joanne Cacciatore, founder of the MISS Foundation, as a way to help families heal from the pain of losing a child. The person in mourning performs an act of kindness for another and leaves a business-sized card, which reads “This random act of kindness done in loving memory of our beautiful child ____________________”. It is a powerful way to continue our children's legacies.
I donated books to Maryvale Hospital 's Center for Mother and Child as my Kindness Project to honor the life of my daughter, Kylie Noelle Southworth. The simple story, called Mrs. Duck and the Woman, is designed to ease the pain of the mother experiencing stillbirth. I hope that each mother who receives a book will find her way to us, here at MISS. We are here to support you. We care.