Sarah Biren
Sarah Biren
May 3, 2024 ·  4 min read

Kyrstyn Johnson: An Open Letter to Parents About Infant and Pregnancy Loss

In life, sometimes the hardest and heartbreaking stories are the ones we need to tell. They’re the ones that are raw, make us vulnerable, and lead us down the paths we fear most. But they are the stories and experiences that can be followed by immense growth. This is one of those stories…

Kyrstyn Johnson is a mother of two beautiful 3-year-old twin girls from Boise, Idaho. When Violet Ann and Lilah Nicole were born on October 10, 2015, they weighed only four pounds each.

Because of this, they spent almost four week in the NICU which is no easy feat for a new mother. But Johnson wholly embraced motherhood and couldn’t be more proud of her “amazing, sassy, and smart” daughters. And then, on August 22, 2017, Johnson gave birth to her third child – a son named Mayson Michael.

“From the moment he came into this world, Mayson was a bright light with the biggest smile on his face all the time. He loved life and learning how to do new things,” Johnson said. (1) “He loved to follow his sisters around the house and see what they were up to. He always wanted to be part of what was going on in the world around him because he loved it so much.”

Johnson went through incredible stress with her first two daughters. So she was relieved that Mayson never had a single health concern and was developing just fine.

But one phone call changed everything…

On April 16, 2018, Johnson and a friend needed to go to the DMV. Leaving Mayson with his father, 23-year-old Trevian Johnson, she expected to be back by the afternoon.

However, around 9 a.m., Johnson’s mother called her in a panic.

“[My mom] goes, ‘Trevian went to wake [Mayson] up and he was unresponsive, he was not breathing. This is very serious, he has not taken a single breath or heartbeat since the [paramedics] arrived.’” (2)

Rushing home, Johnson was met with a sight no mother deserves to witness – police, paramedics, and an ambulance taking her son to the hospital.

Being a mother, she somehow knew what was happening although she didn’t want to accept the reality.

“I ran into the emergency room. I knew what they were going to tell me. The doctor looked at me and said, ‘I’m sorry.’ I was immediately sick, I started throwing up on a trash can. I felt every piece of my soul crack. They took me into the hospital room that he was in and I remember touching him and it was the coldest thing I have ever felt.”

“He wasn’t this warm baby who cuddled me anymore. I could feel part of my soul just didn’t exist anymore. He was lifeless.” (2)

When Johnson parted ways with Mayson, the coroner’s office ran several tests. Eventually, they confirmed that Mayson was a victim of SIDS (sudden infant death syndrome).

What Is Sudden Infant Death Syndrome?

SIDS is the unexplained death of an otherwise seemingly healthy baby. Most often it occurs during sleep to infants under the age of one. According to Mayo Clinic, “it appears that SIDS might be associated with defects in the portion of an infant’s brain that controls breathing and arousal from sleep.” (3)

For almost half a year, Johnson struggled to get through each day without her only son. She has sought counseling and more intensive mental health treatments, but the insurance she does have leaves her with limited resources.

As you can imagine, this took an incredible toll on Johnson’s mental health. She was even hospitalized at one point because it was all too much to handle and had to take a leave of absence at work. Living in a constant state of “shock and despair,” her ability to parent her two twin daughters was also at risk.

One day, however, Johnson had a revelation. She decided that Mayson would still get a first birthday party and his first cake. So, she messaged numerous photographers until one agreed to do the “angel baby” photo shoot – Megan Nutter from Lil’Lemon Photography.

After seeing these photos I realized that maybe, just maybe, I can take my experience, educate, and end the stigma of infant and pregnancy loss. To show other bereaved parents they are not alone. Everyone says they are sorry and they are there for you, but time moves so quickly and those people move on. Yet you feel stuck and alone, so very alone.” (4)

Mayson’s photo shoot also helped Johnson take control of an uncontrollable situation… not only in her own life, but others, too.

When we are faced with circumstances like this one, it’s too easy and unhealthy to push them under the rug; to emotionally shut down; to try and erase the hurt as if it never happened. Thankfully, Johnson refuses to let that happen.

“I will not let my son, Mayson, be forgotten, and I will use his name to make a difference in some way. Be kind, you never know what the random stranger next to you is being faced with in life currently, and have compassion. Hug your children tighter and teach them to be kind as well. In the end, we are all fighting our own battles, but we should never suffer alone.” (4)