It’s been 23 years since my baby Connor died of Sudden Infant Death Syndrome (SIDS.) I know that for many of your that’s a hard sentence to read and some of you might decide to stop reading.
But please stay with me. What I’m about to tell you could save your baby’s life.
Alison Jacobson's Story
When I was pregnant with Connor in 1997 there weren’t thousands of blogs, sites and social media channels about having a baby. There was one source – the book What to Expect When You’re Expecting. Just a book. When I was pregnant I read it cover to cover except for the three little paragraphs on SIDS. I skipped over that part – I mean that wasn’t something that could possibly happen to me. My baby could never die – that was something that happened to other moms.
I had an easy pregnancy and delivery. Connor was full term and born at 7lbs 8 oz. He was completely healthy, and I was ecstatic. I had 10 weeks off for my maternity leave and found an amazing home daycare just blocks away from our home. It was a grandmother and mother in a beautiful cottage in a quiet neighborhood in Connecticut. They doted over Connor and I could tell how much they cared for him.
I’m not going to get into the details of his death, I’ve written pages about that. But I’ll tell you that Connor had just come from a well-visit and was healthy and hitting all his milestones. On August 5th, 1997 I dropped him off at daycare at 7:30A to catch my train into New York City. At 10A I received the call that would change my life forever. It was my daycare provider saying the words I’ll never forget: “There’s a problem with Connor, he’s not breathing.”
My screams brought my co-workers running to my office door. On the long drive to the hospital I kept pleading and bargaining with God – take me, just save my baby. But that wasn’t to be the case. My husband at the time arrived at the daycare to find Connor outside on the ground surrounded by EMTs who were working on him. Unfortunately, even they didn’t know much about SIDS. Connor was already gone.
At the hospital my pediatrician said that while they would have to wait for the autopsy they were certain it was SIDS. In the following days I searched the Internet to read everything I could about SIDS. Fortunately one of the first sites I stumbled across was First Candle (then called the SIDS Alliance.) The woman who answered the phone would become my lifeline for the ensuing months. She connected me with another woman in Connecticut whose baby had died from SIDS and she came down and sat with me and let me sob onto her shoulder. I credit these two women and First Candle with allowing me to continue on with my life.
Fast forward to today. I have three Rainbow babies (the term for babies born after the loss of a baby) My son is 22, my daughter is 18 and my baby is 16. They all know about their brother Connor and both my daughters want to get tattoos of a butterfly which has always been our sign to know when Connor is nearby.
Most importantly I became CEO of the organization that saved my life – First Candle. I believe that if I can save one baby’s life I will have done something in honor of Connor.
Today we know so much more about SIDS than when Connor died. SIDS is a subset of Sudden Unexpected Infant Death (SUID.) Another subset of SUID is Accidental Suffocation and Strangulation. Every year 3,600 babies still die from SUID. Epidemiologists now know that SIDS is even more rare than initially believed. The diagnosis of SIDS is assigned when no cause can be found after an autopsy. We now understand in the vast majority of cases there was some external factor and it is indeed accidental suffocation. In fact, in 79% of the cases the baby was either in an adult bed or laying on soft surface, sleeping in an inclined position (such as a car seat or other inclined device) or in their own crib with a blanket, pillow or loose clothing.
Because of different protocols in each state many death scene investigations do not accurately capture the area in which the baby died. If you recall in my situation, Connor was rushed outside so that EMTs could do CPR. The ensuing investigation would never have accurately captured the death scene as Connor had been moved. Please understand this does not mean anyone did something wrong intentionally these are all tragic accidents.
Today at First Candle we focus on two things – educating care providers and families on the importance of always placing baby in a safe sleep environment and providing comfort and support to families who have experienced a tragic loss.
Both parts of our mission are crucial. We pray for the day when every baby reaches his or her first birthday but there will always be parents who have experienced a loss many years ago and still need support.
So please, if you take anything away from this post, understand that the only place your baby should sleep for naptime and bedtime is:
- In the same room as you but not the same bed.
- Alone on his/her back on a flat firm mattress (if you press your hand down on the mattress and it leaves a momentary indentation it’s too soft.)
- An empty crib with no pillows, blankets, stuffed animals or fluffy bumpers.
When you nurse your baby set a timer so if you fall asleep you can wake up and immediately put your baby back in his/her crib next to you.
Even when taking all precautions, an adult mattress is not approved for a baby’s use which is why we have crib mattresses. It’s similar to cars that weren’t designed for babies and why we now use car seats.
Being the CEO of First Candle is my career but it’s also my passion. The opportunity to communicate these life-saving messages gives me hope that one day every baby will sleep safe.
Alison Jacobson is the CEO of First Candle whose mission is to end Sudden Unexpected Infant Death while providing bereavement support to families who have experienced a loss.
