Menu
eMediHealth Logo
Subscribe
No Result
View All Result
eMediHealth Logo
Subscribe
No Result
View All Result

Home > Heart Health > My Life With Hypoplastic Right Heart Syndrome

My Life With Hypoplastic Right Heart Syndrome

July 16, 2020 - Updated on August 3, 2021
6 min read
By Crystal Flores

In this article:

  • The Meaning of Hypoplastic Right Heart Syndrome
  • The First Sign of Illness
  • My Diagnosis
  • Causes and Risk Factors
  • Living With the Illness
  • The Hardest Part of My Struggle
  • Keeping the Faith
  • A Word of Advice to Other Patients
  • My Appeal to Others

Even though my life with hypoplastic right heart syndrome had been devastating at first, there’s light at the end of this dark tunnel.

hypoplastic right heart syndrome

I’ve learned to use my strength and struggles to empower others who struggle like me. Here’s my story.

The Meaning of Hypoplastic Right Heart Syndrome

Hypoplastic right heart syndrome is a birth defect known as “congenital heart disease,” which causes abnormalities in the heart’s structures.

One out of 100 babies is born with one or more congenital heart defect/s, (1) making it the number one birth defect worldwide. (2)

Advertisements

In my case, the right side of my heart didn’t develop completely. The right ventricle is responsible for pumping blood to your lungs. Since I don’t have a right ventricle, I needed open-heart surgery as a baby and then as a teenager to survive.

I’ve also taken heart medications throughout my entire life to prevent heart failure.

The First Sign of Illness

Today, newborn babies get checked for heart defects right after birth with a test called “pulse oximetry” or while in utero when the mother gets their 20-week anatomy scan and baby’s heart can be scanned.

Unfortunately, when I was born in 1987, these tests didn’t exist and I was sent home without getting my heart checked.

As I grew, my mom and her friends noticed a bluish tint on my skin when I cried. This is known as “cyanosis,” which occurs due to a lack of oxygen in the body, often during an outburst. This puts increased pressure on the heart, making it harder to pump oxygenated blood. (3) 

My mom was concerned already but her friends’ comments convinced her that something was wrong with me. 

Advertisements

My Diagnosis

when was the first time your family consulted the doctor?

After noticing worrisome signs when I was 3 months old, my mom took me to a pediatrician to get a thorough checkup.

After doing an echocardiogram, the doctor said something was wrong with my heart. However, he couldn’t make a diagnosis, and so he referred us to a pediatric cardiologist.

The cardiologist ran more tests, and I was finally diagnosed with seven different congenital heart defects in the right ventricle that together make up hypoplastic right heart syndrome.

Causes and Risk Factors

The statistics on congenital heart defects (CHD) indicate that 85% of heart defects have no known cause. The remaining 15% are caused by genetics, which means they run in the family. (1)

In my case, I was born with heart disease because both my mom and dad were born with heart defects as well.

Although a heart-healthy mother can do everything in her power to carry a healthy child, CHD is random and even the healthiest families can give birth to a child with CHD. It doesn’t discriminate and can happen to anyone.

Advertisements

This is one reason I’m so passionate about advocating for CHD to increase awareness about this condition because an undetected heart defect can result in death.

I fight for awareness every day, so babies won’t go home undetected like I did. I was surprised I lived with a single ventricle for 3 months after birth without any kind of treatments!

Living With the Illness

treatment regimen for hypoplastic right heart syndrome

In order for me to survive with “half a heart” as they call it, I needed to get a series of open-heart surgeries to reconstruct my heart’s circulation so it can pump blood to my lungs.

Usually, patients with a single ventricle like me get three open-heart surgeries, namely, the BT shunt, Glenn shunt, and Fontan procedure. (4) These heart surgeries involve stitching artificial tubes and conduits to the heart, specifically to the main coronary arteries, which are then connected to the pulmonary artery to send blood to the lungs.

These are “palliative” surgeries, meaning they’re not permanent. These parts tend to wear out as the patient grows into adulthood, and they may need a heart transplant in the future.

I’ve taken heart medications since I was 3 months old. I will take heart medications for the rest of my life because there is no cure for congenital heart disease and it requires lifelong care and treatment. (5)

Advertisements

The Hardest Part of My Struggle

I am not going to lie or sugarcoat and say that living with hypoplastic right heart syndrome is easy because it’s not. It’s very challenging honestly.

My journey with heart disease has been quite long, hard, painful, and most of all, full of uncertainty, but I have always tried to remain positive and hopeful through it all, no matter what the doctors say. My biggest challenge throughout my journey is accepting that I was born sick. I don’t know how it feels to be healthy.

During my childhood, I didn’t really understand what was happening to me, but I knew I was different from the kids around me because I couldn’t keep up with them physically and that made me feel alone.

Advertisements

Growing up with a chronic illness can be isolating and can lead to depression, which I’ve struggled in the past.

Keeping the Faith

struggles against hypoplastic right heart syndrome

I may live with half a heart, but I live my life to the fullest. There will never be enough words to express how grateful I am that I’m still alive at the age of 33 years, considering my heart doctors told my mom when I was first diagnosed that I’d never make it past 5 years old.

A Word of Advice to Other Patients

I would say to never give up and to stand strong, remain hopeful, focus on the possibilities, and stay positive no matter what the doctors are telling you.

When you have faith and the will to live, nothing is impossible. Doctors are not God and they are not always right.

You can definitely have success and lead a normal life with hypoplastic right heart syndrome. Just don’t let this condition take over your life. You control your life!

My Appeal to Others

I would say to show more compassion for ill people even if they don’t look sick but say they are. I personally don’t look sick but I’ve been through a lot, and I struggle with nasty judgmental remarks from strangers that don’t understand my illness.

Take a step back and think about how the simple daily tasks you do – such as showering, carrying groceries, getting out of bed, or even breathing without being short of breath most of the time – may seem unimportant to you but they can be a huge feat for someone like me who wishes he could do them as easily. The simplest, most mundane activities are big challenges for me daily.

Know that being sick is not about playing the victim or being lazy. For affected individuals, it’s about constantly being on top of what their body needs to feel well enough and muster the energy to take a simple shower.

When a person is born sick, their body is fighting to stay alive 24/7, and that’s exhausting if you really think about it. As a person with an invisible illness, I can say that all we want is acceptance without judgment.  

References
  1. Data and Statistics on Congenital Heart Defects. Centers for Disease Control and Prevention. https://www.cdc.gov/ncbddd/heartdefects/data.html. Published November 12, 2019.
  2. Xie D, Wang H, Liu Z, et al. Perinatal outcomes and congenital heart defect prognosis in 53313 non-selected perinatal infants. PloS one. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5462529/. Published June 7, 2017.
  3. Ali H, Sarfraz S, Sanan M. Tetralogy of Fallot: Stroke in a Young Patient. Cureus. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6067806/. Published May 31, 2018.
  4. Feinstein JA, Benson DW, Dubin AM, et al. Hypoplastic left heart syndrome: current considerations and expectations. Journal of the American College of Cardiology. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6110391/. Published January 3, 2012.
  5. Lopez KN, O’Connor M, King J, et al. Improving Transitions of Care for Young Adults With Congenital Heart Disease: Mobile App Development Using Formative Research. JMIR formative research. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6298756/. Published 2018.
  • Was this article helpful?
  • YES, THANKS!NOT REALLY
Spread the Love❤️
Advertisements
Advertisements
Advertisements
Advertisements

Newsletter

Get our BEST updates delivered to your inbox:



This site is protected by reCAPTCHA and the Google Privacy Policy and Terms of Service apply.

Categories

  • Nutrition
  • Wellness
  • Oral Care
  • Eye Care
  • Heart Health
  • Skin & Beauty
  • Women’s Health
  • Ear, Nose & Throat
  • Respiratory Health

Links

  • Home
  • About Us
  • Contact
  • Privacy Policy
  • Terms and Conditions
  • Cookie Policy
  • Editorial Policy
  • Advertising Policy
  • Subscribe to Newsletter
eMediHealth

This site provides content for informational purposes only. The information provided is not intended for use as medical advice, diagnosis, or treatment. In case of a medical concern or emergency, please consult your healthcare provider.

This website is certified by Health On the Net Foundation.

Our Network: Little Extra

© 2019 eMediHealth. All rights reserved.

No Result
View All Result
  • Nutrition
  • Skin & Beauty
  • Wellness
  • Yoga & Meditation
  • Women’s Health
  • Heart Health
  • Allergy & Immunology
  • Bones & Joints
  • Child Health
  • Digestive
  • Ear, Nose & Throat
  • Eye Care
  • Glands & Hormones
  • Health News
  • Infectious Diseases
  • Mental Health
  • Nervous System
  • Oral Care
  • Pain Management
  • Respiratory Health
  • Sleep Disorders
  • Urological Health

© 2019 eMediHealth. All rights reserved.