Every year, 100,000 babies don't make it to their first birthday because of CHD.
Elliott Joel Fletcher | Heart Warrior of the Week

Elliott Joel Fletcher is our Heart Warrior of the Week! We talked to his mom, Raquel, who told us all about their families journey with congenital heart disease, Elliott’s heart transplant, and the resilience of their little Heart Warrior.

Name

Elliott Joel Fletcher

Heart Defect

Diagnosed with Dilated Cardiomyopathy 

Date of Birth

September 8, 2015

Diagnosed in utero?

No, Elliott wasn’t diagnosed until he was 15 months.

Describe Elliott in 3-5 words

Gregarious, courageous, shares empathy.

Number of surgeries/procedures

At least 20 procedures 

Types of surgeries

Biopsies to collect samples for any signs of rejection, and levels of heart function. Coronary Angiogram to check for plaque buildup in arteries. Berlin Heart placement before transplant and removal after transplant. The Berlin Heart is a pump that maintains blood flow in small children with serious heart failure, it also serves as a bridge to heart transplant. Heart Transplant which involved the removal of the sick heart and implanting the healthy donor heart.

Time spent in hospital

6 months in 2017 waiting for donor match and healing after Berlin removal. Elliott's skin never healed around tubes in his stomach due to high steroid intake. Because he was highly immunosuppressed at the time it could cause infection, we had to wait longer to discharge due to wound care every day. 

Medications

Yes, he will be on medication for the rest of his life to prevent his body from rejecting the donor heart. 

Restrictions

I don't think Elliott has any restrictions. With a healthy donor heart, he has 100% cardiac output.

Future surgeries/procedures

Yes, he will have future biopsies and coronary angiograms.

Worries and fears you face being a CHD family

Our main worry is rejection or the need for another heart transplant. Thankfully Western medicine and research is constantly growing to support a long life in transplant recipients.

What do you admire most about Elliott?

His resilient and positive attitude through this transplant journey.

Anything else you want to share about your journey with CHD?

It is so important to share stories to help save lives of children with heart disease, and to advocate to organizations that support it. Elliott is a Children's Hospital of Los Angeles Ambassador and has done many public events to support the attention of saving children’s lives.  

 

Dilated Cardiomyopathy 

ANATOMY: The heart muscle becomes enlarged, thick or rigid. This disease is more common in elderly adults but does occur congenitally as well. Pediatric cardiomyopathy is categorized 4 ways: dilated, hypertrophic, restrictive, and miscellaneous varieties.

COMPLICATIONS: Due to this enlargement, the heart muscle stretches and thins, resulting in strained pumping which leaves the body fatigued and lacking oxygen. In some cases, the decreased heart function associated with cardiomyopathy can also affect the lungs, liver and other body systems.

SYMPTOMS Some can go months or years without any symptoms at all. Those who do exhibit symptoms might experience: shortness of breath, fatigue, swelling in extremities, abdomen and veins in the neck, dizziness, fainting during physical activity, irregular heartbeats, chest pain, and heart murmurs.

TREATMENT: Options include medications, catheterizations, surgical repairs, implanted devices, and open-heart surgery.  

PREVALENCE: 1 in every 100,000 children in the U.S. under the age of 18 is diagnosed with cardiomyopathy. The majority of diagnosed children are under 12 months old.

Dilated Cardiomyopathy: Dilated or congestive cardiomyopathy (DCM) is diagnosed when the heart is enlarged (dilated) and the pumping chambers contract poorly (usually the left side is worse than the right).  

This is the most common form of cardiomyopathy, accounting for approximately 55–60% of all childhood cases. This form is detected in roughly 1 per 200,000 children. It can have both genetic and infectious/environmental causes.

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