Personal Stories

Personal Stories

Alia Darci Torres

07/30/07 - 11/14/07

Alia was born on July 30, 2007. She was our 3rd child and had an older sister and brother that couldn't wait to meet her. Her due date was August 8th but I had to have a scheduled C-section and August was filled up. The first available date was July 30th. I was a little disappointed as my birthday is also in August and I always wanted an August baby to share my birthday with, but I settled for July 30th. I was still excited that we would share our birth sign, "Leo." When Alia was born, we felt so content as though our family was finally complete! She was so beautiful and such a good baby! As usual mommy quickly had nicknames for Alia, as I always did with our other children. Alia's nicknames were primarily Pumpkin Pie and Princess. She loved her sister and brother as her eyes would light up whenever she saw them. They would call Alia "baby girl." She would watch and interact with them by talking (cooing). She especially loved having her older sister and brother take turns holding her in their arms. She also enjoyed watching cartoons and movies with them.

Alia was very social and would interact with anyone in her presence. She was verbal at such a young age and would baby talk (coo) to anyone that would listen. We loved having such a beautiful happy baby girl that would smile, giggle and talk (coo) to us every day. We knew how much she loved us, we could see it in her beautiful blue eyes whenever she looked at us. It’s been said that the eyes are the windows to the soul, Alia had so much love in her eyes. Mommy loved how comforted Alia would get just by my presence or touch. Daddy loved how Alia would always laugh especially hard at the silly sounds he would make. She always seemed to laugh especially hard when he would try to make her laugh. We cherished every day and moment that we had with Alia. Her memories will live on with us for the rest of our lives. We felt her love as we shared our love with her every day. Her big beautiful blue eyes and smiling face with those big dimples will never be forgotten.

Alia seemed to be a normal happy healthy baby. Without warning she passed away suddenly and unexpectedly in her sleep on November 14, 2007. It was the worst day of our lives and forever changed us at our core. We Love and Miss our Alia everyday of our lives.

Love, Mom, Dad, Arianne, Ayden, Arissa, and Alise

Unexpected and unexplained infant deaths have been known as SIDS or Sudden Infant Death Syndrome for many years. Currently the trend in the U.S. has been to label these deaths as something other than SIDS. One current alternative to SIDS is referred to as SUID or Sudden Unexplained Infant Death. Even though SIDS/SUID is one of the leading causes for infant death in the U.S. (and worldwide), it is not being widely researched in our country. In fact, there are relatively few researchers interested or vested in this research. This is very disheartening to parents like myself that have experienced this type of loss. The research that is taking place primarily concentrates on finding the cause for sudden infant deaths.

What I like about Dr. Rubens' research is that it is centered around identifying at risk infants PRIOR to a tragic death. I know of no other research that is currently concentrating on identifying at risk infants prior to their death. The current most widely accepted theory is that there may be neurological problems within the brainstem of these infants. However, this is not discovered until after an infant has already passed away. If you are familiar with and support the "brainstem theory" regarding SIDS then Dr. Rubens research should be of interest and make sense to you. Our bodies are like a super highway of traveling neurological impulses. Many if not all our bodies autonomic (automatic) responses converge at or derive from our brainstem. This includes such things as heart rate, breathing, and other autonomic neurological impulses. This can also include neurotransmissions from our inner ears, in close proximity to our brainstem (relatively speaking).

This is where Dr. Rubens theory and research comes in. He believes that it may be possible to identify at risk infants for SIDS/SUID prior to death. With his theory and research, we could further investigate the possibility of identifying at risk babies prior to fatality. In the future, this may include identifying at risk infants through the new born hearing screening that is already being administered in hospitals throughout the U.S.

Henry Abraham McCoy

Henry Abraham McCoy came into the world ready to go. In fact, had his mom allowed his dad to shower before heading to the hospital, Henry would have probably been one of those babies that you read about in the newspaper; born on the side of the highway. Fortunately, we made it to Hartford Hospital just in time to hear the midwife say, “It's a boy.” He was born with dark hair and blue eyes. The blue eyes stayed but the hair fell out soon after. He was tall like his dad but there were varying opinions on who he resembled.

Henry joined sister Charlotte in our family. Charlotte was 22 months old when he arrived and swiftly settled into her role as the doting big sister. She spoke to him in a sing-song voice, piled toys on top of him, and always made sure to have a pacifier ready for him. In return, Henry watched his sister with great interest, tracking her from one end of the room to the other. As with many second children, Henry was toted around from a young age to the children's museum, aquarium, and plenty of trips to Target and the grocery store. He never seemed to mind though. Henry was happy being in the presence of his family.

He hated stop lights but loved listening to music in the car. He tolerated tummy time and had just begun to find his voice, babbling and shrieking to whomever would listen. He had super dry skin and cute little rolls on his thighs. He loved to eat even though he hadn't tried solid food yet. His favorite place to be was outside on a blanket while his mom tended to the gardens.

Henry slept on his back, with a ceiling fan on, and nothing in the crib. He was nursed and had no health issues. Nevertheless, on the morning of May 24, we found him unresponsive in his crib. He was just 4 and a half months old.

Not a day goes by where we don't think about him. His death robbed us of the chance to watch him grow up, to see the relationship with Charlotte blossom, and for us to be the laid-back parents that we once were. Since Henry's death we have welcomed Annabelle into our family. Her arrival was met with so much joy but, also, so much trepidation. In moments of strength, we can find joy in watching our girls play but there will always be a big void in our hearts that we will never get to see our babies together.

-Sarah and Michael McCoy

Baby Aaron

Aaron Kahan

In early 2003 we were so excited to learn that we were expecting a baby boy, to round out our family of 3 girls! We were in the process of a cross-country move to the Seattle area, where we were going to start a new chapter of our lives with our growing family. On October 6, 2003, our new baby boy, Aaron Matthew, was born. He was healthy according to all of the newborn tests and exams. He cried, he fed, he pooped, he slept. He posed for photos with his sisters and grandparents. After everyone had the chance to meet him on that first day, and returned to go home, Aaron fell asleep. He would never wake again.

We had Aaron in our lives for 6 hours, and then he was gone. Without warning, without explanation.

After an inconclusive autopsy, the cause of death was declared "SIDS". Another sudden infant death in America, another big question mark with no answers.

The pain of losing a child is unbearable. All the hopes and dreams that are associated with that little person, die along with him. The innocence and worry-free life of his siblings is stolen. The fear of this happening again becomes front and center when we are fortunate to have another pregnancy 4 years later. Lightning did not strike twice, and we were blessed with another daughter in 2007. We think Aaron played a role in delivering us that gift of a new baby girl.

Grief for our lost baby was all-consuming for a long time. And then, at some point, we felt the need to do something. Something that would honor our only son, make sure his short life was meaningful, and prevent others from having to endure a similar tragedy. At the time, in the early years after Aaron's death, the only SIDS research we could find made us feel worse. Environmental causes like smoking, poor prenatal care, lying baby on his stomach, suffocating items like blankets in the crib, etc. - these were the topics that were being discussed and researched in the field of SIDS. Or, nothing was being researched at all. SIDS doesn't grab the attention of researchers, fund raisers, movers and shakers in the medical field. Although none of those environmental causes applied in our son's case, the research still made me feel responsible somehow. Talk about pouring salt into the wound. So we stopped reading about SIDS. We put our focus on providing support for others who had endured similar losses.

Fast forward to 2015. Our girls are ages 8 - 22, all healthy and thriving. Aaron would have been entering teenage-hood. John developed a new-found passion for hiking mountains. He booked a trip to climb Mt. Kilimanjaro in Tanzania for June of 2016. A light bulb went off. He wanted to make this challenge more meaningful on a personal level, and decided to use his training and big climb to raise funds and awareness for SIDS. He contacted Seattle Children's Hospital to learn about where to direct his fund-raising, and he came across the Children's Hospital SIDS Research Guild, led by Dr. Daniel Rubens. We met with Dr. Rubens and learned about his groundbreaking research around a possible physiological reason for SIDS. What is different in the physiology of certain babies that makes them more susceptible to dying in their sleep? If this can be figured out, then we can identify those babies at risk and prevent this from happening! Upon hearing this, John and I felt chills up and down our bodies. For the first time in 12 years, we felt hope that this SIDS mystery can be solved. Dr. Rubens and his team are onto something big here, we know it. And in honor and loving memory of our son, we have jumped in with both feet to support him.

We hope that others will feel the same hope and provide support for this research in whatever way they can. Let's get SIDS back in the conversation. It doesn't just affect those of us who have lost babies. It affects all new parents who wonder if their baby will be the next to succumb, without warning, without explanation.

With love for all 5 of our children - Emily, Sarah, Leah, Aaron, and Sadie

-Heather and John Kahan