by Shenia Coleman Kirkland (www.1peachymama.com)
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As I wrote in yesterday’s post, one of the NICU doctors came to my husband and I somberly while our daughter slept in her NICU bassinet. He took us into a small room and suggested that we sit down. Then, he told us that one of our newborn daughter’s tests revealed that she had a very rare chromosomal disorder called Trisomy 13, which (as he put it) is “not conducive to life.” I will never forget those words”.....
Trisomy 13 is a genetic disorder in which a person has three copies of genetic material from chromosome 13, instead of the usual two copies. The occurrence of a trisomy is a spontaneous event that happens at the moment of conception and cannot be prevented. The extra genetic material interferes with development. Usually, a woman carrying a fetus with this disorder has a miscarriage around the 10th week. It is incredibly rare for a child with this condition to be born alive. (The reason that it took so long for the doctors to diagnose her is that she didn’t present with many of the physical symptoms associated with the condition.)
The doctor told us, in no uncertain terms, that no child had ever survived with this disorder. He said that the vast majority of women who carry a baby with this condition experience a miscarriage early in their pregnancy. Then, he said simply “she will die.” My response was simple- “I don’t understand”. I didn’t understand how we could put a man on the moon, but no one on the planet could save my two and a half week old baby who was sleeping 20 feet away in her hospital bassinet. Our research confirmed the prognosis. And, we were shaken to the core with pain so intense and raw. I literally wanted to die.
We were told that we our daughter could stay in the hospital until she died. Or, we could take her home. My husband and I decided to bring our daughter home so that she could see her room and live in the home that we made for her. We wanted her to know more than just the inside of a hospital during her short life. We decided not to tell anyone about her prognosis (other than our parents and siblings) because we didn’t want anyone to give her the “look of death” or treat her like she was in some way abnormal.
We decided that we had to look beyond our grief and the sheer terror of bringing home a baby whom we knew would soon die. In an effort to make memories, we went on a family road trip and took a family portrait. She was instantly calmed by my voice, and she was always content in her daddy’s arms. She and her daddy sat on the couch and watched the NBA playoffs together. And, even though I was nursing, my husband and I both got up together for 3AM feedings. We experienced all of the sleep deprivation that all families with newborns know so well. Our daughter smiled and cooed at us, and she definitely expressed her happiness and/or displeasure. Lol! I dressed her up in the many, many, many clothes that I bought for her during my pregnancy. And, we took pictures every single day. We held her. We kissed her. We adored her. She was given more love in her short life than some people experience in an entire lifetime.
A few weeks after we brought her home, our hospice nurse told us that our daughter was “living on borrowed time”. The nurse tried to prepare us that the end was near. I tried to cherish every moment, despite my panic and overwhelming anxiety. A few days later (on the day after our wedding anniversary), our daughter died in our arms. As strange as it may seem, those last hours were horrific and precious at the same time. As her mommy, I did what I could to be there for her during her transition. I softly spoke to her, as my voice had always calmed her. I mustered up every bit of courage and calmness to tell her that it would be okay. And, that she could go. For hours, I caressed her hand as my husband held and rocked her”.... until she took her last breath. While remembering her and her lively, rambuncous spirit is precious, reliving those last hours is truly heartbreaking.
Losing a child results in a profound, primal, gutteral loss that is more intense than anyone can possibly fathom. The pain was so raw and intense that I literally felt as though I would die. I couldn’t breathe. I was broken. Contrasting how I felt in those dark days/months/years following her death with the perspective that I now have is truly amazing. What I couldn’t see in those dark moments was that there IS joy, peace and grace “on the other side” of that excruciating pain. For anyone in the midst of that experience, I have two words for you: hold on. Pray. And, hold on. And, most importantly, as lonely and isolated as you may feel, know that you are not alone.
Please be sure to revisit tomorrow for the third and final installment of this story: “My Baby Daughter’s Death: The Aftermath”.
Until next time”....
Much Love, y’all!
Shenia Coleman Kirkland
CLICK HERE TO SEE THE ENTIRE SERIES
Shenia Coleman Kirkland is an attorney, law professor, novelist, screenplay writer and motivational speaker. She chronicles her journey from a driven corporate attorney (and feminist) to wife and work-at-home mother on www.1peachymama.com, in which she discusses the tenuous balance between motherhood, marriage and maintaining a sense of self. She would love for you to follow her on Twitter @1peachymama.