**This is part of the story of Valentia, Silas’ sister. Valentia passed away at six weeks old of SMARD. This telling is heart wrenching and raw and real–and I believe necessary. In Valentia’s passing, she enabled Silas to be here with us. She should be celebrated.**
VALENTIA PRISCILLA AZELLE WERNER
September 23, 2008- October 23, 2008
The following is an excerpt from a biography I began writing about the events surrounding Valentia’s death. My husband, John, and I were told she died from SIDS, but I never believed SIDS took her life because unlike all the other babies who lost their lives to SIDS in our county (over a five (5) year period), Valentia had no risk factors. It was clear to me that she did not die from SIDS. It was frustrating and I was outraged that nobody in the medical community would listen to me, and merely wrote me off as a grieving mother in denial. As such, I started my own investigation to try to uncover what may have taken her life. Unfortunately we would not discover that she had SMARD until after Silas was born, but if I hadn’t done my own investigation into her death Silas would not be alive today.
Only four pounds when she was born, it was important that Valentia begin gaining weight. The doctors and nurses told me that it was more imperative to feed her every three hours with a bottle than to spend too much time trying to get her to latch on in order to breast-feed her. I was upset for not being able to successfully breast feed Valentia, but John and I still felt blessed that she loved to eat and was growing. We, along with our parents, adoringly referred to her as our little “chow hound.” In fact, she was growing so well that the pediatrician said that she didn’t need to see Valentia until her two-month checkup. Everyone who knew Valentia witnessed nothing but a healthy, growing, gorgeous baby.
When she was born, Valentia looked very much like me with her round face and brown eyes. Her brown eyes changed steadily and soon she had John’s big alluring azure eyes, along with his perfectly shaped sweetheart mouth, his pale skin, and Aunt Laura’s (John’s sister) long, slim frame. She still had a round face and “the Porter nose,” as my dad proudly described it. The hair on top of Valentia’s head was still growing and looked like very fine peach fuzz close up, but from far away, it looked as if she had a receding hairline. It was adorable.
Still sitting on the bedroom floor, I felt the tears begin to swell in my eyes. I took a deep breath, closed my eyes, and quickly wiped away the tears before they hit my cheeks. It was so painful to see the massage chair where I spent so much time feeding and loving and caressing my dear little Valentia. I felt as if I was going to vomit, so I directed my eyes toward the window and concentrated on the melancholy white sky streaming through the panes of glass and the sturdy old oak tree in the distance – the first thing I would cast my eyes upon as I awakened on all those pregnant mornings. I would gaze out the window, look at that tree with its spring buds and think how Valentia will be here with me the next time that those buds begin to blossom. It was here in this room where Valentia was conceived and where Valentia died. That’s when I realize that I’m sitting next to my side of the bed, the exact spot where my baby daughter’s short precious life suddenly ended. Positioning myself on the spot where Valentia died, I pulled my knees in tightly to my chest trying to roll myself into a small ball in an attempt to simulate what it might have been like for Valentia when she lay there. I thought about her taking her last breath that night, trying to imagine what she saw right before she closed her eyes for the final time. I wondered if I was too far away for her little eyes to see me in the darkened room. Then my thoughts faded back to the eve of our nightmare.
Valentia was crying when I lay her down in her crisp white ruffled bassinet, almost as if she was trying to tell me something. I lifted her out and handed her to John while I made a fresh bottle, but John soon discovered that Valentia was “stinky,” so I immediately undressed her so that I could give her a bath. “That’s why you’re crying,” I said. “You’re a stinky little girl. Mama is going to give you a bath.” Before I began bathing her, she was making soft-sounding snort noises through her nose, but it didn’t seriously concern me. Weeks earlier, the pediatrician, as well as all my friends with babies, assured me that these noises were perfectly normal, but the noises stopped when Valentia was in the bath. We had recently turned on the furnace to cope with the cold bitter Pittsburgh weather, so I thought that the cause of Valentia’s muted snorts was all the extremely dry air from our forced-air gas furnace. I remember yelling to John in the next room: “She’s not making those noises anymore. I think it’s because of the steam from the water. I think it’s too dry in that room because of the furnace. Even [our little Yorkshire Terrier] Gigi was making hacking noises earlier today. It must be too dry in there and I think that’s why she was crying.”
I washed Valentia’s soft peach fuzz hairline, and she smiled as I rinsed the suds from her head. Her eyes looked particularly bright and blue that night, which is how I’ll always remember them. When her hair was wet, her sweet little head always seemed larger than her tiny 5 pound, 5 ounce body. “Valentia, I said teasingly. “You are the cutest little alien baby. Mama loves you. You are beautiful. You look more like your Dada every day. You have his big beautiful blue eyes. I love you so much.” I had Valentia’s bathing method well under control at this point, unlike the first week she was home, and it had quickly become my favorite activity. I wanted to savor the moment because I was afraid she would grow up too fast. She loved to feel the warm water splash on her body when I sprayed her with the hand-held hose from the Jacuzzi tub. She absolutely loved bath time.
The room seemed chilly. I think the temperature read 67 degrees. Valentia had only a few smaller undershirts upstairs, and I couldn’t find a clean one, so I dressed her in one of the cotton undershirt style onsie. John was peering over my shoulder to make sure he could undress Valentia for the next diaper change. He was just starting to learn the mechanics of crossover snappy undershirts. “Don’t worry about snapping the bottom,” I explained. “I’m just going to use this as an undershirt.” I lay Valentia down in her pink fleece jumper, the one with the ballet skipper feet that my mom had bought her, and noticed that her feet were cold. So I slipped some warm cotton socks on her feet before I snapped the jump suit. I grabbed the swaddle blanket from her dresser drawer and gently swaddled her, arms to her side. Swaddling is supposed to comfort babies because it reminds them of their tight quarters in the uterus. John used to call it a straight jacket. He had a point.
Trying to help her breathe better, I detached her Sweet Peace (an automated rocker that simulate rocking arms) from its base and set it down next to my side of the bed for her to sleep in. This way she could still sleep on her back, reclined but not totally flat. My friends with a babies told me that one trick to get a baby to sleep was to put them in their carrier. The Sweet Peace was shaped like a carrier, but more relined. “Should I actually get her carrier or do you think this is safe for night sleeping?” I asked John. “When I bought it,” he reminded me,” the guy at Babyland said that his daughter used the Sweet Peace as a bassinet.” “Oh yeah,” I replied. “He told me the same thing.
So I set Valentia down gently in the Sweet Peace, making sure that her little head was in the head positioner so she didn’t slouch over while John plugged in the vaporizer to add moisture to the air. But Valentia continued to cry so I gave her a pacifier. She didn’t seem to want it though. This was unusual because she loved that pacifier so much that John joked that she looked like the baby from the Simpson’s who always had a pacifier stuck in her mouth. Nonetheless, I figured she’d start sucking away as soon as she clamed down. I tucked the bottom part of the pacifier in her little fleece swaddle so that it wouldn’t fall out, a trick I used to hold it in place when I drove with Valentia over to my mom’s house 45 minutes away. I also wanted to ensure it wouldn’t fall out because I had read that pacifiers reduced the risk of SIDS (Sudden Infant Death Syndrome) by 70%, something to do with the sucking motion and brain stimulation. Just that week, I also learned that ceiling fans were significant SIDS risk reducers because they decrease the chance that babies will re-breathe their own carbon dioxide. I didn’t know much about SIDS at that point. I thought it was caused by suffocation and that, for some reason, boys, African American babies, and babies with teenage mothers were more at risk. So even though I had little fear that Valentia was at risk, I turned on the ceiling fan too, just to be extra careful, especially after two different friends who had stopped by that week happened to bring up the subject of SIDS and ceiling fans during the course of their visit.
Valentia was still crying. “Awe, Valentia. Don’t cry. Mama is here. Mama is right here. I can see you and I’m right here.” Those were the last words I spoke to her before she drifted off to sleep. My voice was the last thing she heard before she took her last breath. I sometimes hear myself repeating those words out loud: “Mama can see you. Mama is right here.” Then instantly I feel a hot wave of anxiety course through my body. Recriminating thoughts begin to flood through my mind:
MAMA DIDN’T SEE THAT YOU STOPPED BREATHING.
MAMA WAS RIGHT HERE NEXT TO YOU
BUT DIDN’T KNOW WHAT YOU NEEDED.
MAMA FAILED YOU. MAMA FED YOU IN THIS ROOM.
MAMA LOVED YOU IN THIS ROOM,
BUT MAMA LET YOU DIE IN THIS ROOM.
I had just given birth six weeks ago and now my baby was dead! Buried in the ground. I didn’t want to think or talk about anything else. Nothing else was worthy of my thoughts, and my thoughts were all I had. I wanted to savor every last one. I wanted to climb up on top of every rooftop and scream into a bullhorn:
My baby was alive. She was a person. She lived. She had a birth certificate,
She had a social security card. She had an insurance card. SHE MATTERED!
She was here. She smiled. She cried. She liked listening to her Dada read her
Green Eggs and Ham. She hated getting undressed but loved getting a bath.
She was her own little person with her own personality, but now she’s dead.
My baby is dead! I wanted to scream to every stranger I passed on the street:
VALENTIA DIED AND NOBODY KNOWS WHY!
I wanted someone from television to do a story about her on “Unsolved Mysteries.” I wanted the entire world to know about Valentia. Refocusing my thoughts on seeing Valentia again, I figured that the closest I could ever get to being with her is through her brother or sister. So I imagined what it would be like if someday we have another child. Will he or she look like her? And if we have another baby, will we be able to live in this house? The house where Valentia died? I think about the hundreds of joyful mornings that took place in this house before the single horrifying day that Valentia died and wonder if I can stay here in this handsome old house…our beloved home.