It's Hard to Read Over that Ventilator: A Plea to Follow Safe Sleep Guidelines
On an empty chair at the foot of his crib sat a book. The book had been read to him countless times over the course of his short little life. We read it in the early morning, the mid-afternoon, and in the evening. A cute and enjoyable story about an awkward giraffe. A classic in children’s literature - or at least it should be. The other animals in the kingdom didn’t think Gerald was a very good dancer. In turn, Gerald doubted his own dancing ability.
Our family knew the story well. Anders and Linnea would get excited when we would read the story. We would point out the different animals and we all especially enjoyed the little cricket and his tiny violin.
The book at the end of the bed was the exact same story we’d read dozens of times, but it wasn’t the same book. It wasn’t our book. Because it wasn’t our chair that it was sitting on. Anders wasn’t laying in his crib. We were on the ninth floor of a hospital 200 miles from home.
The nurses had brought a few books in for Rachel and me to read to Anders. We hadn’t asked for them, and we hadn’t requested any particular books, but one of the books sitting on the chair was Giraffes Can’t Dance by Giles Andreae and Guy Parker-Reese.
One of our favorites.
I knew as I grabbed Gerald’s story off the chair that it most likely was the last story I was ever going to read to Anders. Earlier that morning the MRI results came back from the scan the night before. There was very little brain function, and what was left was declining. Our sweet little boy, who had only a week prior celebrated a late Christmas, was now brain dead.
Our sweet little boy, who had only a week prior celebrated a late Christmas, was now brain dead.
I opened and read of Gerald - the fear that he felt when it was his turn at the Jungle Dance. My own anxiety towards dancing once again crept in as I pictured myself running away to be off by myself. Anders was never able to dance, at least in the way that most of us think of dancing. He had been walking for only a few weeks.
Gerald was off by himself when a small cricket approached, encouraging Gerald to look around at nature and see how all nature has a dance to it. Even if it might not be what others recognize as dancing, there was music and rhythm that drew dancing from the grasses, the leaves, and the trees.
How did we end up in this situation?
The closer I got to the end of the book, the sadder I got. Anders laid in the crib, hooked up to tubes and monitors, with the thumping sound of the high-velocity ventilator drowning out the other beeping noises in the room. He’d been like this for three days.
Anders’s day started like any normal day that Thursday, January 10th. Rachel dropped both Anders and Linnea off at daycare like she did every day. But Anders fell asleep in his car seat and wasn’t taken out of the seat to begin his morning like he normally was upon arrival. At one point that morning, the provider noticed that Anders’s lips were gray.
His head had dropped forward and cut off his airway. He quit breathing. His heart stopped beating.
The provider pulled Anders from his car seat and started CPR. Paramedics quickly arrived and after 40 minutes of CPR, and a miracle of God, Anders’s heart started beating again. But he wasn't breathing on his own.
As we moved from the emergency room to a hospital halfway across North Dakota, we learned the damage had already been done to his brain. And as I sat at Anders’s crib and finished the book, I kept coming back to the reality that these were the last moments I would spend with my son on this side of heaven.
What can you do to prevent this from happening to you?
October is Infant Loss & Awareness month along with SIDS Awareness month. Our experience from January 10th-12th, 2019 put us in both categories. We continue to grieve the loss of our son and our hearts break for all the other parents that have also experienced the same. We are even more ardent safe sleep advocates.
Safe sleep is the only sleep for infants and babies. Anders died of positional asphyxiation in an unsafe sleep environment (in a car seat, outside of the car, outside of the base).
Safe sleep is as simple as ABC (Click Here if you would like to learn more about safe sleep)
1. Alone - Keep the baby in a safe area (crib, pack-n-play, bassinet) free from anything other than the baby: no bumpers, blankets, pillows, stuff animals, or loose clothing.
2. Back - Lay the baby into the safe sleeping area on their back - not on their side and not on their stomach. When a baby can roll over by themselves, that's ok, since most babies roll front to back before rolling back to front. Even still, when babies start to roll, place them into the crib on their back.
3. Crib - Keep your baby in a crib/bassinet/pack-n-play and not with you or anyone else. There are all kinds of research encouraging parents to keep the bassinet in the room for months but let the baby sleep where the baby is safest, and it is by themselves.
Having twins, we understood how important it was for our kids to be asleep. We loved when our kids would both be sleeping at the same time because that meant that we could get some sleep. But we also were aware of the dangers of unsafe sleep. We were diligent in following the recommendations for a safe sleeping environment.
Our babies didn’t have blankets or bumpers, they didn’t have stuffed animals, and they always slept alone. We always placed them on their backs and we didn’t let them sleep in a swing or lounger.
When telling our story so many people had no idea that unsafe sleep applied to car seats as well. We often hear of products that have been marketed to help with sleep and have been recalled (most famously the Rock ‘n’ Play Sleeper). Maybe you’ve heard the recent news of the 3.3 million Boppy pillows that are explicitly NOT for sleep but have still been recalled. But car seats are all about safety - so why not safe for sleep?
Infant car seats aren’t designed for safe sleep, because they are designed to protect the infant in a crash. Properly installed in a car, the American Academy of Pediatrics recommends that babies only stay in a car seat for two hours at a time.
Losing Anders has given us a platform to share our story with others. We share this story for two reasons:
First, to prevent what happened to us from happening to anyone else.
But most importantly, to point others to our comfort and strength through this trial - King Jesus.
We’ve felt pain and suffering deeper than we would ever have imagined, but at the same time experienced a peace that was more real and genuine than we ever thought possible. When we had learned that the damage to his brain was too great, we prayed for a miracle. The one-in-a-million kind of miracle.
But we also prayed that we would remain faithful to God, the Creator of all life. We prayed that we would be strong and courageous. We prayed 1 Corinthians 16:13, Anders’s dedication verse, over him and ourselves. “Be on your guard; stand firm in the faith; be courageous; be strong.”
“Be on your guard; stand firm in the faith; be courageous; be strong.” - 1 Corinthians 16:13
And God has answered that prayer. Over and over again. Every day for the past 1013 days, God has provided us with peace, strength, and courage.
At the end of the book, Giraffes Can’t Dance, young Gerald looks at nature and listens to nature’s song...and then dances the most amazing dance. When I read that book to my kids now, I think about reading it to Anders in the hospital, and then I picture Anders dancing in heaven while worshipping his Creator and Savior.