Barrett's Story

Before Barrett

Barrett's story really begins before we ever knew him.

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In October 2016, we found out we were expecting our first baby. We saw a heartbeat, watched our tiny baby moving on the ultrasound screen, and excitedly began telling the people we loved.

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At our 10-week appointment, everything changed.

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Our baby, whom we had affectionately nicknamed “Little Bit,” no longer had a heartbeat.

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Genetic testing later showed that Little Bit had Triploidy and that he was a little boy.

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It was our first introduction to a kind of grief we never imagined carrying.

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Not long after, we became pregnant with our rainbow baby, Penelope—our Poppy. She was born in February 2018 and came into our lives like a wrecking ball in the very best way. We finally had a baby in our arms.

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And then, when Poppy was about nine months old, we found out another baby was on the way.

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We had no idea how profoundly this little boy would change our lives.

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Our Barrett

We had loved the name Barrett since we were dating, so when we learned our baby was a boy, there was no question what his name would be.

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Barrett Zachary Bone.

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His pregnancy was a joy.

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I felt him kick for the first time around 17 weeks, and soon he was moving so much that Tyler could see my belly moving from across the room. I would wake up early just to lie there and feel him move. If I gently pushed on my stomach, he would kick back.

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I loved being pregnant with him.

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At our 20-week anatomy scan, we learned Barrett had a two-vessel umbilical cord. Doctors monitored him more closely, but we were reassured. Toward the end of the pregnancy, he became slightly growth restricted, and the decision was made to induce me at 37 weeks.

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On June 14, 2019, after a 28-hour labor, our first son entered the world.

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Five pounds exactly.

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There were cheers, smiles and happy tears.

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Our boy was here.

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And almost immediately, something didn't feel right.

Something Was Wrong

Barrett's cry wasn't as strong as we expected.

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I remember asking if I could nurse him and being told no because he wasn't breathing well enough.

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That's when I knew. Something was wrong.

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I encouraged Tyler to hold him and do skin-to-skin. Neither of us knew at the time that it would be the only time Tyler would hold his son while he was alive.

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Soon, Barrett was taken to the specialty care nursery because his oxygen saturation and blood sugar were low.

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We told ourselves it was no big deal. He would get some extra help, start breathing better, and we'd bring him home. Instead, our world began changing by the hour.

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Barrett was transferred to another hospital for higher-level NICU care. We were initially told he would probably be home within three or four days.

But he kept getting better, then worse. Better, then worse.

Eventually, doctors determined he needed to be transferred again—to the highest-level NICU and the most extreme life support available.

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The transport team arrived and tried to move Barrett onto their ventilator.

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He crashed. Again and again.

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Finally, the doctor came out and gave us two choices no parent should ever hear.

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We could risk transporting Barrett while manually ventilating him, knowing he might die during the 15-minute ambulance ride. Or we could stay where we were and say goodbye.

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I had just given birth days earlier. I remember falling to my knees.

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Tyler asked the doctor one question:

“What would you do if this were your son?”

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He said he would risk the transport.

So we did.

The Sickest Baby in the NICU

Barrett survived the ambulance ride.

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By the time he arrived, his oxygen saturation was 57 percent.

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Everything moved incredibly fast. Staff lined the halls waiting for him. Elevators were opened. A surgeon was called.

Barrett needed ECMO—extracorporeal membrane oxygenation, an extreme form of life support that essentially does the work of the heart and lungs.

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There was one requirement that still stops me when I think about it:

A baby needed to weigh at least five pounds.

Barrett was exactly five pounds.

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The chief of surgery came in, explained what was going to happen, and essentially told us he needed to go save our son.

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And he did.

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Barrett survived the surgery and went onto ECMO.

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We were later told that our son was the sickest baby in the 200-bed NICU.

And yet, there he was.

Fighting.

28 Days of Loving Him

Life became measured differently during those weeks.

Numbers on monitors.

Rounds.

Procedures.

Good news.

Devastating news.

And waiting.

So much waiting.

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Attempts were made to take Barrett off ECMO, but his heart and lungs couldn't sustain him.

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Doctors worked through the most likely explanations first and gradually moved toward increasingly rare diagnoses.

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For three weeks, we lived in the unknown. And through all of it, we were also parents to Poppy. She was still a toddler. She needed her mom and dad while her baby brother needed us at the hospital. We knew she was surrounded by people who adored her, but the feeling of being torn between our children was excruciating.

We couldn't be in both places.

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Years later, that part of our story would become incredibly important.

At the time, though, we were simply surviving it.

The Diagnosis

Eventually, doctors performed a lung biopsy.

Barrett was diagnosed with Alveolar Capillary Dysplasia (ACD), an extraordinarily rare and typically fatal lung disease.

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The only possible option was a bilateral lung transplant.

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I remember pumping breast milk when one of Barrett's doctors appeared at the door. She saw what I was doing and said she would come back later.

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There was something in her face.

I looked at her and asked:

“He has ACD, doesn't he?”

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She said yes.

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Our hearts sank.

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But there was still a possibility—a transplant.

So we held onto it. Barrett had to meet an extensive list of requirements to be placed on the transplant list. At one point, we were brought into a conference room and told he had both a brain bleed and a clot. That meant he couldn't receive a transplant.

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We thought his story was ending.

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Then another ultrasound was performed. They couldn't find the clot.

Suddenly, he was eligible again. That was life with Barrett.

Hope.

Devastation.

Hope again.

Sometimes within minutes.

I Just Wanted to Hold My Baby

After we received his diagnosis, a nurse asked if there was anything they could do for us.

There was only one thing I wanted.

I wanted to hold him.

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Because of the ECMO equipment keeping him alive, holding Barrett was incredibly complicated. It took five nurses and nearly two hours to prepare everything necessary to move him safely into my arms.

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I hadn't held my baby in three weeks. So they made it happen.

And I held my boy. It would be the last time I held him alive until the day he died.

It's Okay, Baby

Barrett continued fighting. 

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Eventually, surgeons needed to reposition the ECMO cannulas from his neck directly into his heart to determine whether his heart could support a lung transplant.

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The surgery itself went as well as it could. But afterward, Barrett's blood pressure continued falling. The pressure in his pulmonary arteries remained dangerously high.

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His medical team tried everything.

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We watched them resuscitate our baby throughout the day.

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Finally, there was one option left—an incredibly rare procedure that had reportedly only been performed once before in the country.

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We chose to try.

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Our entire family waited with us while Barrett went into surgery.

Eventually, a nurse came to get us. Barrett wasn't tolerating the new support. His heart had already needed to be restarted with CPR. We walked into his room. The medical team had done everything they possibly could.

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As they performed CPR on my baby, I told him:

“It's okay, baby. You can go to Heaven.”

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We asked them to stop.

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And we held our son as his life here ended.

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Barrett Zachary Bone lived for 28 days.

Twenty-eight days that changed every day that would come after them.

His grandparents held him and sang Jesus Loves Me.

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Then we did something no parent imagines doing.

We left the hospital without our baby.

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But Barrett's Story Didn't End There

For a long time, Barrett's story was about what we lost.

And we lost so much.

First steps we never saw.

Birthdays we never celebrated with him.

A little boy who never got to run through our house, annoy his sister, wrestle with his brothers, go to school, play sports, or grow into whoever he would have become.

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I would change the ending of this story in a heartbeat. But I can't.

What I can do is decide what happens with all of the love that still exists for him. And there is so much of it.

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Barrett's initials are BZB. Early in his life, my best friend pointed out that they sounded like “busy bee.” Other people began saying it too.

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The bee became Barrett's symbol.

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Years later, that little connection would become the inspiration behind Buzzy the Bee—a children's grief book created because of everything our family learned about children and grief after Barrett died.

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But even before Buzzy, something else was growing from Barrett's story.

The Siblings Who Grieve Too

When Barrett was sick, we experienced firsthand what it meant to have one child fighting for his life while another child still needed her parents.

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Poppy was only a toddler. She couldn't possibly understand the magnitude of what was happening.

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Then suddenly, her brother was gone.

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As the years passed, we began to understand something that wasn't talked about nearly enough:

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When a child dies, their siblings grieve too. They are sometimes called the “forgotten mourners.” That stayed with us. And eventually, it became impossible to ignore. In 2023, we founded Blessings for Barrett to support children grieving the death of a sibling and to help families navigate a loss that we know far too personally.

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What began with our family has now allowed Barrett's name to reach children and families far beyond anything we could have imagined.

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His life was 28 days.

His impact continues to grow.

And Then Came His Brothers

When our original story about Barrett was first shared, I was 16 weeks pregnant with his little brother, Archer.

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At the time, we wrote that we were nervous but trusted that Archer had two guardian angels watching over him.

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Today, Archer isn't the baby waiting to be born at the end of Barrett's story anymore. He's part of it. And so is Warner, the little brother who came after him.

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Our family continued growing after Barrett died.

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And that has been beautiful, complicated, joyful and heartbreaking all at once.

Our boys know they have a brother named Barrett. Poppy knows she has a little brother who should be growing up alongside her.

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Barrett isn't a secret or a sad chapter we close when the conversation becomes uncomfortable.

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He is their brother.

He is our son.

He is part of our family.

And he always will be.

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Our children have also taught us something incredibly important: grief doesn't end when the funeral ends.

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Children grow.

Their understanding grows.

Their questions change.

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They experience their sibling's absence differently at different ages and milestones.

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That understanding is woven into everything we do through Blessings for Barrett.

Because of Barrett

I used to think Barrett's story ended on July 12, 2019.

It didn't.

I see pieces of it everywhere now.

In every grief box packed.

Every child's name we learn.

Every parent who trusts us with their story.

Every hospital that places something comforting into the hands of a sibling whose entire world has changed.

Every project we create.

Every time someone says Barrett's name.

Every time one of his siblings talks about their brother.

Every time a bee appears exactly when we need one.

And every time something created because of him makes another child feel a little less alone.

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We would give all of it back to have Barrett here.

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There is no accomplishment, organization, book, recognition or impact that could ever make losing our son “worth it.”

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We don't believe that tragedy had to happen so something good could come from it.

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We simply decided that if we had to carry this grief for the rest of our lives, we would carry Barrett's love forward with it.

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That is why Blessings for Barrett exists.

That is why we talk about sibling grief.

That is why we keep saying his name.

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Barrett was here.

He is loved beyond measure.

He changed us forever.

And as long as we are here, his story will keep going.