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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
Tristan Allen Hills arrived Saturday, April 30 2017 on the 5th birthday of his oldest sister. Tristan's birth was highly anticipated as our family had waited many years to have a son. With three big sisters, Tristan was going to be well taken care of. He was more perfect than we could have ever imagined. He was a perfectly healthy baby and nearly off the chart for height and weight. The joy Tristan brought to our family was incredible.
On August 8th, at 3 ½ months old, all of that changed. A parents’ worse nightmare was now our reality. Tristan had been found, after being put down from a nap around 45 minutes prior, unresponsive. Attempts to resuscitate failed and Tristan passed away at the hospital where he was born only a few months prior.
The pain that we have gone through and continue to go through is unimaginable outside of the infant loss community. We were left with so many questions: How could a healthy baby die? What could have caused this? Could Tristan’s death have been prevented? Our biggest hope is that the medical mystery of Sudden Infant Death Syndrome (SIDS) can be solved. I believe wholeheartedly in the mission of the Aaron Mathew SIDS Research Guild. Nothing can bring our Tristan back, but figuring out what causes SIDS—and in turn finding a way to prevent it—provides hope to SIDS parents. I look forward to the day that no more SIDS deaths occur.
- Robin Hills
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.
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.
- Love, Mom, Dad, Arianne, Ayden, Arissa, and Alise
Alison was born on November 25, 2004. It was Thanksgiving. She was tiny, weighing 5 lbs. 10 oz. and measuring just 17 inches long. She was here on Earth with us for 87 days. She passed away and went to be with God on February 22, 2005. She was my second child, my first daughter. She is very much, still a part of our lives… we share pictures and memories. We celebrate her birthdays, so that her “younger” siblings know how loved she was.
- Nichole Sevick
My son is now 29 years old. When he was a baby, I found him blue in his crib. I pulled him out and started doing CPR and breaths. I called the ambulance. It took them 1/2 hour to arrive. Nathan would start breathing and then stop, but I just kept on giving him breaths and CPR. It was crazy because, he would start breathing and for no reason just stop. The ambulance arrived and gave Nathan O2 and checked him out and we went to the hospital. Lots of tests were run because I wanted to know what happened to him. The doctors said they had no idea and that it could have been SIDS. I was so afraid to take him home in fear it would happen again. He always slept with me in the same room. I was lucky it never happened again. It was the the most helpless feeling. No reason why. I will never forget that day. I am lucky to have my son.
- Teri McKinney
My 1st great grandson was born on March 3 2011, he was a handsome little man who looked like both his parents: Jordan Ray-Michael Jilg-Brown and Emma Johnson. It was a normal delivery and mom was a real champ working through pain. Dad was there for every minute of the labor and delivery. My grandson and girlfriend took him home after 2 days in the hospital. Tyvell was a good baby but his parents noticed he would stop breathing while napping. This started around 3 weeks after he was born. So they would wake him up and call the doctor or go to the hospital where they where told he was fine and just keep an eye on him. This kept happening so they went to the hospital again and was told that Tyvell needed a monitor but without proof of insurance they could not afford it so they refused to give them one. So they ended up taking turns staying up all night while they where both in school and my grandson working. When Tyvell was 7weeks old, his parents both fell asleep and when they woke up they realized that Tyvell did not wake for his feeding. They checked on him and he was not breathing so my grandson started CPR while mom call 911. When the police, firetruck, and ambulance got there, they rushed him to the hospital. The police would not let Tyvell's parents go to the hospital because they needed to take statements from the parents, accusing them of injuring their baby. They pleaded with the police for over an hour.
In the mean time, both families were called and rushed to the hospital. The parents finally were able to go see what was going on with their son. When they got there, Tyvell was stripped of his pajamas, wrapped in a blanket laying on a table. He was surrounded by 3 police officers, not letting anyone hold him - only touch him. It was very upsetting not only losing Tyvell but not being able to hold him for the last time. He passed on April 22nd 2011. The funeral took place at the Indian Center it was a 3 day event according to his Native American hearitage. His mother his Native American and his father is African American. It was the worst 3 days of our lives. It did not feel like a funeral and to this day I don't feel closure. He is buried in babyland where his dad and uncles dug his grave and his dad and my son helped lower his casket into the hole they had dug. Even worse, Dad and his uncles had to shovel the dirt on top of the casket to fill it up. A few weeks later they received his birth certificate but it was a death certificate instead. My great grandson was born alive and lived for 7 weeks. The autopsy came back that he did pass from SIDS. This could have been prevented if the hospital would have gave them the monitor they needed. They have another child now, and a monitor was sent home with him after he was born because he had the same issues of stopped breathing when he slept. He was on the machine until he was 6 months old. He is now a 6 yr old little brother to Tyvell. I will never get over the loss of Tyvell Dan-Loften Jilg-Brown.
- Mary K Nolin
My beautiful baby boy, Trevor, passed away from SIDS at just 3 days shy of turning 7 months old. He was such a smart and alert baby. He rarely ever cried and was always happy and laughing. He always wanted to go upside down if you were holding him and he would just laugh and laugh. He was my only baby. He has made an impact on the community because not many people knew about SIDS until this happened to my family. Now, my mother and I donate oxygen monitors to mothers that may not be able to afford them. I also plan on hopefully creating a fundraiser as well for SIDS research in Trevor's name.
- Victoria Schinzel
Our perfect son, Grey, was born on December 20, 2016. He entered the world with a legion of loving family waiting to meet him as he was the first grand baby on my husband's side of the family and also first child for his parents. We had a wonderful Christmas and New Year's spending time getting to know our little man, he was such a happy baby. Grey had big and bright, blue-grey eyes and light brown hair. He took to breastfeeding immediately and loved being snuggled by his mom, dad and extended family members. Becoming Grey's mom is the greatest joy of my life, he showed me the power of pure and true love. I was so excited to spend the rest of my life with him. On March 17th, 2017 at just 87 days old he took an afternoon nap at the babysitter's and never woke up. Our first and only son was taken from us by the mystery of SIDS.
After his death I scoured the internet trying to find answers. Why did this happen? I went over his final day and the days prior to his passing in my mind endlessly. Did I miss something? Did I do something wrong? Did the babysitter do something to him? I was assured by the medical examiner that there was nothing we could do to prevent his passing, yet, I still find it hard to accept. I am so incredibly thankful for the Aaron Matthew SIDS Research Guild because we need answers! There is more to SIDS than current trend of 'limiting risk factors' -- we practiced all of the guidelines and we still lost our son to Sudden Infant Death Syndrome. No parent should have to suffer from this crushing loss, it is truly more than safe sleep!!
- Love and light, Sasha and Stacy Bruce
My son Lazarus was born September 10th, 2016, he was 6 pounds 1 ounce, 18 inches long. He was such an amazing baby. He became my absolute best friend I couldn't imagine my world without my Lazzy. Then April 25th, 2017 my whole world changed it started off a normal day even better than normal Lazarus stood up by himself for the first time. He was chasing out cats around trying to put their heads in his mouth lol. I laid him down to take a nap around 6pm. Then I fell asleep, I woke up around 10 to put his big brother to sleep they shared a room.
Lazarus was sleeping on his belly, so I put my hand on his back to feel for his breathing, I felt nothing, I said his name over and over again no response. I flip him over to find my little 7-month-old baby purple... I panicked I went and yelled for his dad he came him and did CPR on Lazarus until 911 got there. We get into the ambulance I just keep saying to myself "No,No,No" we arrive at the hospital where I see my baby laying on the hospital table non responsive. The doctor looked at us and said the words sorry and my heart dropped to the floor. I gave him one last kiss. April 25th at 10:00 my whole world flipped upside down. I miss my Lazarus Mychael.
- Amber Young
My name is Bettye Nicole and I am the mother of an angel (Bailey Nicole). Bailey passed away June 26th, 2015 at the tender age of 4 months and 2 days. It was so unexpected and the thought of me finding her still, lifeless body still stings my heart today.
I am writing to you because of the ad that I saw on a news site today. I see that you are hosting a campaign and I am very interested in assisting you. I have a heart and passion for families and them finding true healing after the loss of SIDS. I truly believe what's from the heart reaches the heart. When you have walked the tumultuous valley of grief from losing a child, that is a difficult task.
When you topple that pain with confusing questions of (why and how) that in itself adds more pain to an already broken heart. I lived with this heartache and confusion for many months and I was able to get through because I relied wholly in my faith in God and his sovereignty. That is where I have found my greatest comfort. But I also know and I am very aware of the medical side of all this. If I can do anything else to honor my sweet Bailey's life, it would be to help an organization, like yours, bring awareness to SIDS.
- Bettye Nicole
As my first born daughter's 18th birthday approaches, I am reminded of the joy and fear I felt the day she was born. How was I going to take care of this child, what if I do something wrong, how will I be able to protect and guide her…. These were some of my thoughts as they are with many parents after having your first child. Days went by of taking care of this precious baby girl and the fears drifted away as I became consumed by my overflowing love for this precious gift.
On February 20th, 2001 I can still see her face as she smiled for the first time while we were outside and she heard the airplane fly over our house. My heart just melted with joy and I could instantly see my future with her and all the things we would do together as mother and daughter.
February 21st, 2001 is a day I will never forget. In the middle of the night I woke to find my daughter not breathing. Immediately my husband called 911 but there was nothing they could do for her. She was gone in an instant. My life changed and while feeling lost and overwhelmed with grief I felt I had let my daughter down. Nobody could explain what had happened to her or why she was not with me anymore they just labeled it SIDS.
Years have passed but I miss her just as much today as I did the day she went home. I was forced to find a new kind of normal in life after only having her for 2 months and 3 days. I since have had two more precious daughters that are now teenagers but we can’t help but wonder sometimes what Sadie would be like? Would she play soccer like my youngest or sing like my middle daughter or would she have been into something totally her own? People always give me the sad “awe” when they learn about her and my response is don’t be sad for me, I would have her all over again even knowing what the end looks like. I wouldn’t trade not one moment of those 2 months and 3 days I had with her! She was a blessing to me and my family.
Over the years I have participated in triathlons. I have done almost all levels of them from the Sprint distance to the ½ Ironman. I have finally decided to give the full Ironman a shot, 140.6 miles of fun in Santa Rosa, CA on May 11, 2019! Swimming 2.4, cycling 112 and running a marathon will be my biggest physical challenge to date. With Sadie’s 18th birthday approaching on 12/17, I have been feeling like I wanted to do something to honor her life and what better way than to bring recognition to SIDS? I am not sure if your organization would allow me to have a triathlon suite created with your organizations information on there? I am not the fastest age group athlete but I sure do have a lot of heart and love for raising SIDS awareness.
- Ashley Harrison
Norah Claire Guerke, our Littlest Love, was born on February 24, 2018 at 9:04 pm - at exactly 37 weeks gestation. Her big sisters had been praying for a sibling for an entire year. She was due on our anniversary, which is also St. Patrick's Day. How lucky were we?! We absolutely loved being a family of five! We felt so content, so complete. Yeah, things were hectic sometimes - just as they always are in busy families - but everything was so much fun and so beautiful with our three girls. Everyone adjusted fairly quickly.
Right around the 3 month mark, Norah began sleeping through the night. She was so laid back and so verbal; just an overall pleasant baby. Addy and Sydney were thriving as Biggest and Middlest. Hank and I were doing pretty great juggling work, home, family and fun. Every single day, I would send Hank a text or verbalize to him, that Norah was the greatest thing that could have happened to our family. Addy had filled our hearts, Sydney had expanded our hearts, and Norah had completed our hearts. WE were complete.
However, my fears and concerns that occurred prior to pregnancy, continued. Everyone assured me that Norah was fine; doctors assured me that she was healthy. She WAS healthy, yet I still kept thinking something was wrong or that something would happen to our sweet baby. Maybe it was me being unable to imagine being blessed for a third time. Or maybe my intuition was stronger than I could have imagined. On June 15, 2018, after a morning of Norah requiring extra feedings and lots of extra snuggles, I gave her a warm bath, rocked her for a bit, and laid her down for her noon time nap.
This was the last time we would see our baby girl alive and well. About 90 minutes later, I went in to her room to wake her. She did not wake up. Our nightmare began at that moment and nothing has been the same since. Norah's short life was powerful, and still is. She touched so many lives in her 111 days here on Earth, and in the days beyond. We will continue to shine her light across the world for as long as we are here. We are hopeful that she can help in this research, to eliminate the monster that has stolen so many precious babies, and turned families upside-down.
- Adrienne & Henry Guerke