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

Name: Justus Metts

Defect: Tetralogy of Fallot with pulmonary atresia

Birthday: May 8, 2018

Described in a few words: fighter, resilient, determined, intelligent, sweet

Diagnosis: Originally diagnosed with Truncus Arteriosus at 18 weeks gestation, which was later corrected to his current diagnosis after birth.

Surgeries: One heart procedure – a RV-PA conduit placed via heart catheterization at two-weeks-old to keep the pulmonary valve open, allowing blood to flow properly through the heart.

One open-heart surgery – at five-months-old, to patch the hole that separates the two chambers of the heart and replace the conduit with a larger one that his heart will grow into and extend the time before his next open-heart surgery

Time spent in hospital: He has spent about nine weeks in the hospital.

Medications: Justus is currently medication-free!

More of Justus’ story, as told by his Mom, Jealisia:

Currently, Justus is like any normal child, but we do monitor his activity closely. He is very active and quite a daredevil, but he does get sick easily so we keep him in the home a lot to minimize contact with germs.

Justus does not currently have any procedures scheduled but we are expecting at least two more open-heart surgeries in the future. We’re not certain on the time frame because it’s dependent on when his heart outgrows the conduit. However, we’ve been given an estimate of the next open-heart surgery being between the ages of 10-12.

There is not a day that I don’t worry about my child as a Heart Mom. I worry that he will need another surgery sooner than we originally expected, but I try to keep a positive mindset because he is doing so well at the moment.  I’m learning to take things one day at a time and live in the present. Because Justus gets sick so often, it’s been a challenge trying to work full time and care for him when he comes down with illnesses. I’ve had to miss so much work as a result but I know I have to do what’s best for my child.

Justus is so resilient and tough! That’s what inspires me to keep going, even on the really hard days. He has overcome so many things but looking at him, you would never know what he has been through. My warrior has proven himself to be just that – a warrior. From the very beginning. Every day I look at him and I’m amazed! He is smart, witty, strong, full of life and personality! He loves music, and to sing and dance.  He is such a happy little guy; I’m so proud and so blessed to be his mom!

Justus’ Heart Defect

Tetralogy of Fallot (TOF)

Anatomy: TOF is actually four heart defects in one, they include – ventricular septal defect (VSD), pulmonary stenosis, right ventricular hypertrophy, and an overriding aorta.

Ventricular Septal Defect (VSD)
The heart has an inner wall that separates the two chambers on its left side (left atrium & left ventricle) from the two chambers on its right side (right atrium and right ventricle). A VSD is a hole in the septum between the heart’s ventricles that allows oxygen-rich blood from the left ventricle to mix with oxygen-depleted blood from the right ventricle.

Pulmonary Stenosis
This defect involves the narrowing of the pulmonary valve, creating an obstruction when blood tries to flow from the right ventricle to the pulmonary artery to receive oxygen from the lungs. With pulmonary stenosis, the pulmonary valve cannot fully open.  Thus, the heart must work harder to pump blood through the valve.  As a result, not enough blood reaches the lungs.

Right Ventricular Hypertrophy
With this defect, the muscle wall of the right ventricle becomes enlarged due to underlying causes that put added stress on this part of the heart. 

Overriding Aorta
This defect occurs when the aorta, the main artery that carries oxygen-rich blood from the heart to the body, is displaced between the ventricles and directly over the VSD. 

Complications: With Tetralogy of Fallot, not enough blood is able to reach the lungs to get oxygen, and oxygen-poor blood flows to the body, resulting in dangerously low oxygen saturations. Pulmonary stenosis puts additional strain on the heart, resulting in it overworking itself which leads to an oversized right ventricle.

Symptoms: A bluish coloration of the skin (cyanosis), shortness of breath, rapid breathing, especially during feeding or exercise, fainting, poor weight gain, tiring easily during play or exercise, heart murmurs and tet spells (sudden development of deep blue skin, nails and lips after crying, feeding, or when agitated).

Treatment: Tetralogy of Fallot is repaired with open-heart surgery to repair all four defects. Additional surgeries throughout adolescence and adulthood are common to repair or replace the pulmonary valve.

Prevalence: This is one of the more common CHD’s, occurring in 5 out of 10,000 live births.

**Some babies born with TOF have additional heart defects, like pulmonary atresia.  With this defect, the pulmonary valve doesn't form correctly.  Instead of opening and closing to allow blood to travel from the heart to the lungs, a solid sheet of tissue forms. Because of this, blood can't travel by its normal route to pick up oxygen from the lungs.  In some cases, small amounts of blood are able to travel to the lungs through other natural passages within the heart and its arteries.

 

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