We arrived at Kosair around 3:00 early Thursday morning. When I first saw Lindsay there, a new thought came to my mind: "She could die. Oh dear God, our baby could die!!" I felt someone had emptied everything out of my chest and stomach, and was nearly delirious with grief and pain. Such crazy images went through my mind: I wanted to run down the halls screaming at the top of my lungs; I wanted to get down on my knees and pound the chairs with my fists; I wanted to pick her up and scream, "Wake Up! Oh, please, Lindsay. Wake up! This isn’t real! Wake up!" I wanted to hold her close and cry on her cheeks. But I didn't do any of those things. I just stood there in shocked silence, staring down at this beautiful baby girl laying amidst a jumble of syringes, tubes and arterial lines.
She was on full life-support, being kept alive with a drug called Prostaglandin that kept a duct in her heart open, that normally closes after birth. Three black threads led through her navel to her heart for the medications she needed. The breathing tube was taped across her cheeks. Boards were taped to each arm to hold them steady for all the needles they had in her. The sights, sounds and smells of the NICU surrounded me with the liquid substance of nightmares. All these machines hardly seemed necessary. Her only movement was a gentle pulsating in her chest, like the fluttering wings of a dove. They said it was her heart.
Dr. R. drew a picture of Lindsay's defective heart: The left ventricle was practically nonexistent. There was no pulmonary valve. The mitral and aortic valves were both blocked. The aortic arch was a very small flimsy tube. The outer structure of her heart was made up of thin membrane, instead of muscle. A hole had been pushed open between the two upper chambers of her heart and a backup of blood was leaking into her chest cavity. The blood flowing through her body was low-oxygen mixed with high-oxygen blood. This may be depriving her other organs of oxygen, thereby damaging them as well.
When I saw that picture, all hope was destroyed. Lindsay’s heart was hopelessly too small to
sustain life. She never had a chance of survival once she was born ~ once her connection with me through the umbilical cord was severed. She was now connected to a mechanical mother, and yet she was still in heart failure.
At 1:00, Thursday afternoon, Phil and I, along with my mother, my brother and his wife, sat in a family conference room with Lindsay's team of doctors as they explained our options:
•1) Remove all life-support •2) A complete heart transplant. (At that moment, however,
Lindsay's condition was so critical she couldn't be considered a candidate.) •3) A series of
experimental surgeries that would rebuild the structure of her heart. Chances of survival? 7% at best. So we had to make one of the most horrible decisions we will ever have to make: To remove the life-support and let nature take its course.
We were led to a small private room near the NICU. The doctor placed a beautiful baby in my
arms and whispered, "She has about two hours to live." With all the high-powered NICU equipment removed, she looked like a different baby, so lovely and healthy. My arms just couldn’t stop holding her. I laid her head on my shoulder, then I laid her in my lap, then I cradled her in my arms, then I laid her head on my shoulder again and could not give her all the love I had for her in such a short time. "Please . . ." I wept. "I don’t want you to go." We took pictures (not enough), rocked her, sang to her and memorized her sweet face. We spent our time telling her about the world, about Grandpa's rose garden, her nursery, her family, her home. And her little hand held on to my finger, almost like she was saying, "I don’t want to go either."
And now we wait. All the while I am thinking, "Just two hours . . . just two hours to live." The weight of her little body seemed to crush me as I stared into her precious little face. Tuesday I gave birth; Thursday I hold death in my arms. It hardly seems possible.
The interval between each breath is unbelievably long. Her eyebrows go up with each inhale and with each exhale we hear the sweetest little sigh. It is the first and only time we
heard her voice. Her face turns from pink, to blue, to pink over and over again. After an hour she began breathing even slower, slower. As she gently released her strong grip on my finger, I covered her cold, white hands with the blanket. ("Come on, Lindsay. Please don’t die. Prove them wrong!")
The threat of death looms ever nearer. But peacefully, peacefully. We hardly knew when she took that final breath. One doesn’t know exactly when. Not quite. It is a very subtle transition. She remained warm so long after the last breath that we wondered, again and again, if there won’t be one more whispered sign of life, one more sigh.
I felt myself take a deep Lamaze-breath, as if I hadn’t breathed at all for two days. Our Lamaze teacher hadn’t told us she was teaching breathing techniques for child-death, too. So many thoughts ran through my mind, yet the room was utterly still. What could we say? Our baby’s heart had stopped beating.
Nothing I had ever seen or heard about death held true. Lindsay’s death was "beautiful". She turned a healthy pink, the color of newborn babies, and like a final gesture she closed her little mouth. (Was it really the last breath?) She appeared to be smiling ~ gentle, soft. As if all was well with her. As it should have been.
Her Uncle Norm stared into her face, awed, and with an unsteady voice said: "I never knew it could be like this. I pray my death will be as peaceful as this has been."
And her Grand-Jenny softly cried, "We have just entertained a little angel for one hour and forty minutes."
All I could manage was, "Mama, is she in heaven now?"
"Yes, she is," my mother whispered.
Such pain I have never known!!! And yet I found being this close to death, when it so intricately involves one you love, brings a tenderness unlike any other; similar to holding an infant in the minutes after birth. I felt it spread through my heart out into every joint, every fingertip. It is painful and blissful, inside and out. A tenderness I still cherish today.
I lost all track of time. I don't know how long we sat in that little room, holding Lindsay after she died. It may have been thirty minutes, or an hour, or an eternity. I couldn't imagine putting her down and never seeing her or holding her again! After a while, the doctor came and sat in the chair next to mine. Then we we kissed our Lindsay goodbye, placed her in the doctor's arms and left the room. I will never forget my last sight of her there: I looked back to see Dr. R. rocking our Lindsay ~ spending a moment of silence with our little girl. Treating her as tenderly in death, as she did in life.
Lindsay died on May 25, 1989 (her due date), Thursday afternoon at 3:30 ~ a life-time of 44
hours. It has taken me many years to get past the pain of Lindsay's death, much longer than I expected, and certainly much longer than the time-frame set by society standards. Time has
moved on for us: Katie Rose was born, we moved to a bigger house, I got a job, and I have come to some sort of peace about her death.
Someone told us that we would come to appreciate the "gifts" that Lindsay gave us ~ gifts we never would have known if she had lived. Lindsay's life has affected not only our immediate family, but people we don't even know. We have met and grown to love many friends who have blessed my life tremendously. Because of Lindsay, I have learned that our family can survive unbearable pain. I have been taught the true meaning of "compassion" and to accept certain realities in life. I have discovered new hopes and dreams. I have learned to face the uncertainty of life, as well as the certainty of death. I have learned to laugh again, to celebrate life and love again. Perhaps the greatest lesson of all is to love our children unconditionally ~ just as they are, wherever they are.
Through everything these facts remain: Lindsay was a miracle in my life, a transforming
influence and a source of great joy. Her death does not change these facts, and we remain forever grateful for the gift of Lindsay.
