One mom’s story of losing a child to SIDS

Jamie Tople, an Ohio mom who lost her first son to SIDS four years ago, tells us her story and how she hopes to educate other parents about this life-threatening condition.

Hello, Jamie. Please, tell us a bit about yourself and your story.

Jamie Tople the leader of SIDS Support

My name is Jamie Tople. I’m 34 years old and live in Copley, Ohio.  My husband, Mike and I have three beautiful children, one in heaven and two on earth.  I’m currently a stay at home mother but previously worked for Children’s Services as a social worker, investigating allegations of abuse and/or neglect.  Social work has always been a passion for me but after our son passed away and we were due to have another child I decided I would not return to work and would stay home.  My husband is a flight paramedic and works for Akron Children’s Hospital in the Transport Department.  He is also a volunteer firefighter in Sharon Township.

On Jan. 18, 2011 we welcomed our first child, Michael Ryan Tople.  He was born healthy at 6 lbs and 13 ounces.  I stayed home with him as long as I could after his birth, which was about three months.  I returned to work even though I didn’t really want to.  We had found a fabulous babysitter that came highly recommended by some of our friends, and she lived in our neighborhood so we thought it was a great match.

When Michael was one day shy of turning four months old I got a phone call that changed my life forever.  Our babysitter called, she was hysterical and had said that Michael had turned blue and that he wasn’t breathing.  I was in Cleveland working at the time and was about 45 minutes from home.  Someone from the fire department got on the phone and told me I needed to meet them at Akron Children’s Hospital.  I wasn’t given much information, I demanded they tell me if my child was dead or alive and they avoided the question, saying that I needed to focus on driving safely.  I knew in my heart something was terribly wrong.  My mother also works at Akron Children’s Hospital so I immediately called her and told her to get the ER to meet the medics and check on my son.  I called my husband who went to the sitter’s house but the ambulance had already left.

When I finally made it to the hospital, after the longest drive of my life I was lead to a quiet room.  My mother was standing there holding Michael and my husband was next to her crying.  They both shook their heads, I knew he was gone but couldn’t understand why.  I was told that he had been taking a nap and when our sitter went to check on him, he wasn’t breathing.  The sitter, paramedics and the ER all tried to get him to breathe again, but were unsuccessful.  I had never been so afraid in my life.  My son was gone, my heart was broken.

After a thorough investigation and autopsy it was concluded that he passed away from unknown reasons and it was ruled a SIDS death.  A diagnosis of exclusion, we still don’t know what SIDS is which makes it that much worse.  We don’t have an answer as to why our son stopped breathing that day.  Since we lost Michael I have changed in a lot of ways.  I have dedicated a lot of my time to helping others that have been affected by SIDS, the silent killer.  I long to find an answer, a cure.

Had you ever heard about SIDS before your first child passed away from it?

I knew about SIDS and safe sleep because of my job.  I was a social worker working with families and taught safe sleep practices to my clients.  I thought if I always laid my baby on his back that we were safe.

What is the most important thing you’ve learned about SIDS that you didn’t know before you started your own research of this topic? Why is it important?

SIDS is the leading cause of death in infants. Currently there is no cure for SIDS.  There is no way to prevent SIDS. The only thing we can do is decrease the risk of SIDS by following the safe sleep recommendations and even then it’s still not enough.

For parents who are expecting or have a newborn, what should they know about proper parental care?

There are many things a parent can do to reduce the risk: Always place your baby on their back for sleep.  Babies should sleep in the same room as their caregiver until they are one year old.  Mothers need proper and regular prenatal care.  Mothers should not smoke, nor should babies be around smoke.  There should never be any loose blankets in the crib.  Babies should sleep alone but near their caregiver on a firm mattress with a tight fitted sheet.  Breastfeeding has been found to reduce the risk of SIDS.  Babies should be given all the their vaccination on time.  There should be nothing in the crib, no blankets, stuffed animals, crib bumpers, etc.

You’re the leader of a SIDS community on Facebook. What is your goal with your involvement in this group? What do you hope to achieve?

Since Michael died, I try to raise awareness of SIDS however I can.  I try to educate others on safe sleep in any way that I can.  I do this in remembrance of my son.  I do this because my son’s life has purpose and meaning.  I do this because I will not allow my child’s death to be in vain.  I currently facilitate a group on Facebook that is titled SIDS Support.  I have been able to connect over 3,000 people and give them a safe space to discuss and share their grief, their stories.

I started the group SIDS Support because I was looking to communicate with others that were going through the same thing.  I felt alone in my grief and couldn’t relate to others that lost children in different ways.  I wanted to be able to share my grief journey with others and hopefully raise awareness about SIDS in the process.  After my son died I became so aware that no one was talking about infant deaths let alone SIDS deaths and I wanted to change that.  I wanted my son’s life to continue to have value and meaning, and in a way he could live on through me and through my work.  We currently have about 3,500 members, with new members joining every day.  It began as a site for my friends and family and grew from there.  I never did any advertisement; all of the members are from word of mouth or were referred from others that are members.

What else do you do to raise an awareness for SIDS ?

I take part in a few events each year.  In December we attend the Christmas Box Angel of Hope, this is a memorial event that takes place each year to honor children that have passed away.  I have been a co-facilitator in a bereavement group at Akron Children’s Hospital.  There is an annual memorial titles, “A Night to Remember.”  This event is a fundraiser for the SID Network of Ohio.  We donate to the SID Network of Ohio on a regular basis as well.  And lastly we attend a memorial golf outing with the Thomas Hilt Allen Foundation in the summer, this foundation raises funds to help those that have lost children financially and emotionally.

At any opportunity I educate others on SIDS.  With friends, family members and strangers.  If I see something that looks concerning, I speak up.  I educate others through SIDS Support and try to spread facts about SIDS and extinguish myths.  I am also am independent social worker helping families through the licensing process to become foster and adoptive parents.  I educated potential foster and adoptive parents on SIDS.

SIDS deaths have declined over the last decade, but it’s still the leading cause of death for infants under a year. Is enough being done to prevent these deaths?

There needs to be more research and funding geared towards SIDS.  Dr. Hannah Kinney is conducting the leading research in the United States at Boston Children’s Hospital and she is making great strides in her research and findings, however it’s not enough.  Parents should not have to bury their children, ever.  Although SIDS deaths have declined since the introduction of safe sleep practices and The Back to Sleep campaign it still remains the leading cause of death in infants under the age of one year.

Where are we lacking when it comes to SIDS? I.e. need more medical research, not enough parent education, etc.

I do believe that education is a key.  Safe sleep needs to be discussed more frequently and in greater detail not only in the public but also at doctor’s appointments, hospitals, etc.  So many are ill informed or think they are invisible to SIDS by not following safe sleep recommendations, these parents are putting their child at a higher risk of SIDS, most unknowingly.

What do you think about using smart monitoring devices to alert you to potentially dangerous conditions, like a delay in your baby’s breathing or a shift to an unsafe sleep position?

I of course recognize that a monitor won’t reduce the risk of SIDS; it may not even prevent a SIDS death. But, it does have a huge purpose. It lets you know if your child is in trouble, in an instant. It lets you know that you need to check on them right away and possibly start CPR.  It gives your child a fighting chance should something horrible happen.  Most often a SIDS baby isn’t found until it’s too late. If we could be notified that a child isn’t breathing and instantly intervene, who knows how many lives could be saved.  Being a mother that lost a child to SIDS, I rely on these types of devices, not only for peace of mind, but it could save my child’s life. All parents should be CPR certified.  In our home, these devices are a must.

Have you lost a child to SIDS? Share your story with us here.

You Might Also Like...

Leave a Reply

Your email address will not be published. Required fields are marked *