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

Hudson is our Heart Warrior of the Week! Learn more about his journey with CHD, as told by his mom, Tiffany. 

Name: Hudson Kyo Suh

Defect(s): Dilated Cardiomyopathy

Date of birth: October 9th, 2018

Diagnosis: Hudson was diagnosed in utero at 33 weeks, we were told his condition was so bad he would be stillborn.

Described in a few words: Strong, Independent, Adventurous, Daring, Strong-Willed

Surgical history:

  1. Bowel Biopsy - After birth hudon wasn't passing stool so they had to do a bowel biopsy to confirm he didn't have something clle hirschsprung's disease
  2. PICC line - needed for nutrition (tpn + lipids to aid in growth)
  3. PICC line exchange - change the sizing of the tubing due to vein growth
  4. LVAD Berlin Heart Implant - Hudson’s health started to decline further and as his heart grew weaker, it needed more support.  The LVAD Berlin Heart is an exterior pump directly attached to the heart through the chest cavity that pumps blood to maintain blood pressure.
  5. LVAD Pump Exchange - clot formation in the tubes can cause strokes so the pump must be switched out.
  6. Heart Transplant
  7. Dialysis - Six weeks after transplant Huddy went into heart rejection and his kidneys started to fail. In order to try and keep him alive and his kidneys working he needed dialysis 
  8. G-tube - a feeding tube inserted into his stomach through his abdomen because he didn’t eat orally.

Time spend in the hospital: 10 months continuous from birth and then two additional short admissions.

Medications: Hudson will be on a combination of two anti-heart rejection medications every 12 hours for the rest of his life.

Does Hudson face any restrictions? As far as living a “normal” life, no restrictions. However, there are little things like avoiding citrus fruits like grapefruit and tangelo because they react against his anti-rejection medications. We also have to be extremely careful around cold and flu season, making sure Hudson isn't exposed to people who are sick.  Hudson isn’t allowed to have live vaccines so it’s important he only plays with vaccinated children.

Future surgeries: Currently he has a g-tube surgery scheduled as well as a heart biopsy. We will be replacing his current g-tube to a button g-tube; and the heart biopsy is a checkup required for all transplant children.

Worries you face being a Heart Family? I don’t think there will come a day where there won’t be any worries. He’s already immuno-suppressed because of his anti-rejection medications, meaning he’s more susceptible to catching a disease/sickness and not recovering in a timely manner.  Currently with COVID-19 going around, we practice a strict quarantine because it is likely he will not recover if he catches it. We also worry about the day he needs a second transplant since heart transplants only last 10-15 years on average.

What inspires you about Hudson? He’s a little boy who wakes up and conquers each day with a smile on his face.  He is resilient and has persevered against all odds at such a young age. His strength and determination to live life to the fullest with an innocent curiosity inspires us to do exactly the same.

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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