Emmett’s Cardiac Quest

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Welcome to Emmett’s heart warrior journey❤️‍🩹

Emmett was born with severe Ebstein’s Anomaly, a congential heart defect which affects 1 in 200,000🫀

09/20/2023-09/01/2024🕊️

Take life at a snail’s pace🐌

https://linktr.ee/emmettscardiacquest

You should be here baby💔🐌
13/03/2026

You should be here baby💔🐌

12/03/2026

“I can’t even imagine.”

I hope you never have to.

I hope you never sit across the table from a doctor who tells you there is something wrong your baby.

I hope you never walk into each ultrasound terrified your baby’s heart has stopped beating.

I hope you never give birth in a room filled with more doctors than you can count praying your baby survives.

I hope you never have to watch your baby be wheeled down the hall to an OR where surgeons will cool their body down and stop their heart.

I hope you never have to sit next to your baby laying in a hospital bed with an open chest listening to the monitors beeping.

I hope you never have to watch your baby silently crying, pleading with their eyes for you to take away their pain.

I hope you never have to meet with the palliative care team and discuss quality of life for your child.

I hope you never have to stand helplessly in the corner of your child’s hospital room while you watch their care team do everything possible to save them.

I hope you never hear the words “there is nothing more we can do”.

I hope you never have to hold your baby as they take their last breath.

I hope you never have to navigate life with a piece of you missing.

I hope you never have to walk in my shoes.

Today is National Rare Disease Day and we are honoring our sweet Emmett and the rare genetic mutation that shaped his en...
01/03/2026

Today is National Rare Disease Day and we are honoring our sweet Emmett and the rare genetic mutation that shaped his entire journey.

Emmett had an EPHB4 gene mutation. EPHB4 plays an important role in how blood vessels and the circulatory system form and develop before birth. When this gene does not function properly, it can disrupt the normal development of veins, arteries, and the heart.

His mutation caused CM-AVM2, which stands for Capillary Malformation–Arteriovenous Malformation type 2. This condition affects the vascular system and can cause abnormal connections between arteries and veins. These abnormal connections are called arteriovenous malformations. They can change the way blood flows through the body and put extra strain on the heart.

Emmett also had severe Ebstein’s anomaly with pulmonary atresia. Ebstein’s anomaly is a rare congenital heart defect that affects the tricuspid valve. In this condition, the valve is malformed and sits lower than normal inside the right side of the heart. This can cause the right side of the heart to be enlarged and function poorly. Pulmonary atresia means the pulmonary valve, which allows blood to flow from the heart to the lungs, did not form correctly. Because of this, blood could not flow normally to his lungs to pick up oxygen. Both of these conditions together made his heart anatomy extremely complex and very fragile.

On top of that, Emmett had Abernethy malformation. This is a rare vascular condition where the portal vein, which normally carries blood from the intestines to the liver, does not connect to the liver the way it should. Instead, the blood bypasses the liver and drains directly into the systemic circulation. The liver plays a critical role in filtering toxins and supporting overall metabolism, so this abnormal blood flow can affect many systems in the body.

Each of these diagnoses on their own is rare. Together, they made Emmett’s anatomy very complicated and incredibly high risk. There was no clear roadmap. No large studies. No easy answers. Just a tiny baby fighting against odds most people will never have to imagine.

Rare diseases affect millions of families, yet each individual condition may impact only a small number of people. When you are the parent of a child with a rare diagnosis, you quickly learn how isolating it can feel. You also learn how strong your child truly is. Stronger than they should ever have to be.

Emmett lived his entire life in the hospital. He endured more procedures, surgeries, and challenges than most adults will in a lifetime. And still, he showed us what courage looks like in its purest form.

Today we honor him. We share his name and story. We raise awareness for EPHB4 mutations, CM-AVM2, Ebstein’s anomaly, pulmonary atresia, and Abernethy malformation. We stand with every family navigating a diagnosis that most of the world has never heard of. Rare doesn’t mean alone.❤️‍🩹🐌

I never understood how disorienting child loss could be until we were actually living it.It’s this constant feeling of b...
26/02/2026

I never understood how disorienting child loss could be until we were actually living it.

It’s this constant feeling of being off. Like the world keeps moving, but we’re just walking through it completely lost.

It’s more than just missing him. It’s feeling incomplete all the time. Family pictures feel incomplete. Conversations feel incomplete. Even the happy moments carry this quiet ache underneath them.

I read something that said grief is like a constant hum, always there in the background and sometimes it’s all you can hear. That’s exactly what this is. It never really leaves. Some days it’s quieter. Some days it’s overwhelming. But every single day feels unfinished somehow.

There’s always someone missing. And it’s someone so needed. Someone we never imagined living without.

Nothing feels whole without Emmett. No matter what we do, everything feels incomplete. We are forever missing our sweet boy in every single moment, every single day. 🤍🐌

21/02/2026

Hancock County mom raises awareness for infant heart defects after losing daughter

We are so grateful we had the chance to meet Bennett and witness the way his smile lit up the entire Heart Center floor....
21/02/2026

We are so grateful we had the chance to meet Bennett and witness the way his smile lit up the entire Heart Center floor. He brought so much light with him everywhere he went. We’re always keeping Bennett- and his family in our thoughts and prayers.💙❤️

We miss you more than any words could ever describe. Living these last 17 months without you has been the hardest thing ...
19/02/2026

We miss you more than any words could ever describe. Living these last 17 months without you has been the hardest thing we have ever had to live through. Knowing our baby is not coming back and still having to continue on every single day is a pain that is impossible to explain.

Oliver talks about you every day. Just yesterday he pointed to a plane in the sky and asked if they were going to Emmett’s hospital. Moments like that take our breath away. It just is not fair. Ollie should get to grow up with his baby brother, and we should get to have our family together.

You should be here, baby.💔🐌

Before Emmett, I was so uneducated about CHD. I thought a congenital heart defect just meant someone’s heart had formed ...
17/02/2026

Before Emmett, I was so uneducated about CHD. I thought a congenital heart defect just meant someone’s heart had formed a little differently. I didn’t even realize my sister, Emmett’s aunt, has CHD. I had no idea that a heart defect could be a sign of something more.

CHD is the most common birth defect. About 1 in 100 babies is born with a congenital heart defect. Right now, doctors can clearly identify a genetic condition in about 15 to 20% of kids with CHD. That includes chromosomal conditions and single gene mutations, like Emmett’s EPHB4 mutation.

But there are so many unidentified genetic conditions still waiting to be discovered and documented. Sometimes, when families are told their child’s defect was random, it could just mean the cause isn’t known yet. That’s one reason why awareness and research are so critical!

It also explains why two kids can have the same heart diagnosis and live very different lives. On paper, their hearts might look similar,
but genetics can affect healing, feeding, lungs and other vital organs, growth, and how their body handles surgeries and medications.

We need more research into CHD, especially in children with genetic conditions. A child with a genetic mutation may not fit the mold of another child with the same CHD but no genetic condition. I believe that if we had understood more, we might never have opted for the Glenn procedure. I can only hope Emmett helped prove that no two children are the same and just because something works for one child doesn’t mean it will work for all.

We will always spread awareness for him and all the heart warriors. 🤍🐌

Emmett was born with a rare congenital heart defect called Ebstein’s anomaly.Ebstein’s anomaly affects the tricuspid val...
13/02/2026

Emmett was born with a rare congenital heart defect called Ebstein’s anomaly.

Ebstein’s anomaly affects the tricuspid valve, the valve on the right side of the heart that helps blood move in the right direction. In a typical heart, this valve opens and closes to keep blood flowing forward. In Ebstein’s anomaly, the valve is formed lower than it should be and often does not close properly. This can cause blood to leak backward instead of moving efficiently to the lungs to pick up oxygen.

Ebstein’s anomaly is very rare. It accounts for less than 1 percent of all congenital heart defects and occurs in approximately 1 in 200,000 live births.

Because the valve does not function normally, the right side of the heart can become enlarged and overworked. Children with Ebstein’s anomaly may experience low oxygen levels, difficulty feeding and growing, abnormal heart rhythms, heart failure, and the need for medications and surgery. Some individuals have mild forms and may not need intervention for many years. Others are born with severe forms that affect heart function immediately, like Emmett.

His heart worked incredibly hard from the very beginning. He lived his entire life in the hospital. His days were filled with monitors, medications, procedures, and constant medical support. What many people may not realize is that even within the same diagnosis, outcomes can look very different. That is why awareness and research matter so much.

Ebstein’s anomaly is rare, but for the families living it, it becomes everything. It becomes every breath, every number on the monitor, every decision made with hope and fear intertwined.

We share Emmett’s story so people understand that behind a rare diagnosis is a real child, a real life, and a family who loves them beyond words.

For Emmett. And for every heart warrior. ❤️💙

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