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

Name: Winston Cheung.

Defect: Double outlet right ventricle (DORV), transposition of the great arteries (TGA), and atrial septal defect (ASD)

Birthday: June 23, 2018.

Described in a few words: Sweet, sunny, strong and curious.

Winston’s story, as told by his Mom, Dee:

Winston was diagnosed in-utero at my 22-week ultrasound; they did three scans at my local hospital and couldn’t find the heart because he was laying sideways so they sent me to a women and children’s hospital where they were able to diagnose him right away. I’ll never forget that day… I was with my parents and my mom fainted prior to hearing the news so she was taken to another hospital and my dad went with her.  I was alone when I received the news about Winston.

The radiologist told me to call my husband right away and tell him to come to the hospital because there was something wrong with our baby’s heart. We were sat down and given our options – abort, continue the pregnancy, and/or give him away for adoption – and since I was fairly far along, we were told our decision would have to be decided within a week as we were getting close to the cut-off point for abortions. They described all his heart defects to us and it felt like such a blur at the time; all I could think about was what his quality of life would be like.

We had so many questions but we knew none could be answered until he arrived. They told us that he would require a risky, life-saving surgery right after birth and then two more in the first couple years of his life.  The blessing in disguise was that we met Winston’s cardiologist and cardiac nurse that same day we found out about his diagnosis and they’ve been with us throughout this entire process.

Winston has had two surgeries and one procedure done so far, with one more still to go – the Fontan surgery which will complete his new circulation and take place between the ages of three and five.  He had a PA band placed and an atrial septectomy done just shy of three-months-old; these were to help prolong the time he needed to grow before his Glenn surgery.  He’s also had a catherization and his Glenn took place this past July; he did remarkably well and we were in the hospital for just four days. 

At the beginning of his life, we were in the NICU for a week then had bi-weekly appointments with his cardiologist.  For his first surgery (PA Band), we were in for seven days, then monthly appointments with his cardiologist. Thankfully, we are now seeing his cardiologist every six months.  He isn’t on any medication at the moment which we are so thankful for.

There are always worries being a Heart Family - especially when it gets colder and flu season comes around. Developmentally, we worry whether he’ll stray behind other kids. We also worry if he’ll feel resentment or loneliness due to his illness once he’s in daycare or school and realizes he’s not quite like the other kids.

Despite all that, Winston has shown us what true strength and grace through all hardships looks like. Every time he goes in for a procedure or surgery, we are if course scared and upset, but every time it’s almost as if Winston tells us that “he’s got this” in little ways, either by waking up much earlier than expected or getting to leave the hospital earlier than anticipated. He’s always looking for a new adventure and doesn’t care about what happened in the past; which I’ve been trying to do myself.

When I look back on how I felt at the time I found out about Winston’s heart defects, I wish I could tell myself not to worry as much as I did and to take everything one day at a time. I want parents who have just found out their child has CHD to know that there is a huge and supportive community online and in their local communities who will rally behind them and be there through it all. It’s so helpful to participate in conversations and get to know others in the community – you are not alone.

Double Outlet Right Ventricle

Anatomy: In a healthy heart, the pulmonary artery connects to the right ventricle and the aorta is connected to the left ventricle.  In DORV, both connect to the right ventricle. Another heart condition called a ventricular septal defect (VSD) always occurs with DORV.  There are four types of DORV:

DORV with a subaortic VSD
The VSD is located just below the aorta. With this type of DORV, blood flows from the left ventricle through the VSD and then into the aorta. Blood from the right ventricle flows mainly into the pulmonary artery.

DORV with a subpulmonary VSD (Taussig-Bing anomaly)
The VSD is located below the pulmonary artery and oxygen-rich blood flows from the left ventricle, through the VSD, and into the pulmonary artery. Oxygen-poor blood from the right ventricle flows mainly into the aorta.

DORV with a doubly committed VSD
There are 2 VSDs – one below the aorta and one below the pulmonary artery.

DORV with a non-committed (or remote) VSD
The  VSD is not located near the aorta or the pulmonary artery.

Complications: Because the right ventricle holds oxygen-poor blood and the aorta carries blood to the body, this abnormal anatomy means the aorta circulates oxygen-poor blood to the body instead of what it should be circulating – oxygen-rich blood.  Thankfully, the VSD allows some oxygen-rich blood to flow to the body. But even with this added oxygen, the body may still not get enough, causing the heart to work harder.

Symptoms: Shortness of breath, heart murmur, sweating, extreme tiredness, fast or difficult breathing, bluish color to the skin (cyanosis), no interest in feeding, loss of weight or no weight gain.

Treatment: Depending on the type and severity of the defect and how old the patient is, this condition is treated with open-heart surgery in which the doctor surgically places the pulmonary artery and aorta in their correct positions. VSD’s are also closed during surgery.

Prevalence: DORV accounts for approximately 2-3% of all congenital heart defects. It occurs in about 1/10,000 births worldwide.

Transposition of the Great Arteries (d-TGA)

Anatomy: The aorta connects to the right ventricle and the pulmonary artery to left ventricle, just the opposite of a normal anatomy.

Complications: Because of this abnormal connection, deoxygenated blood is re-circulated to the body before it has a chance to pick up oxygen from the lungs. At the same time, oxygen-rich blood is continuously being pumped from the heart to the lungs in a cyclical pattern, never dispersing the oxygenated blood throughout the body.  This leaves the body with dangerously low oxygen levels.

Most babies are born with a small hole in between their left and right ventricles, after a few hours or days of life, the hole closes on its own. This hole is actually a critical component for babies with TGA as it allows some oxygen-poor blood to mix with oxygen-rich blood, enabling the body to receive at least small amounts of oxygen.

Symptoms: Blue color of the skin (cyanosis), shortness of breath, lack of appetite, poor weight gain or weight loss.

Treatment: Often times, a balloon procedure via catheterization is performed to enlarge or create the above mentioned hole shortly after birth to improve the baby’s oxygen levels. The repair for TGA is an open-heart surgery where doctors surgically place the aorta and pulmonary valve in their proper positions. This surgery usually takes place at around one week old.

Prevalence: d-TGA accounts for approximately 5% of all congenital heart defects, affecting boys more than girls at a rate of 3:1. It occurs in 2-5 out of 10,000 live births worldwide.

Atrial Septal Defect

Anatomy: This defect occurs when the heart’s inner wall (septum) that separates the left atrium from the right atrium has a hole or multiple holes in it. 

Complications: This defect allows oxygen-rich blood from the left atrium to leak into the oxygen-poor blood in the right atrium, this can lead to lower-than-normal oxygen levels in the arterial blood that supplies the brain, organs, and tissues.

Symptoms: Shortness of breath especially during exertion; fatigue; swelling of legs, feet or abdomen; heart palpitations or skipped beats; frequent lung infections; stroke and heart murmurs.

Treatment: Most ASD’s close on their own with time, but larger ones will require catheterizations or open-heart surgery in which a patch is placed over the hole.

Prevalence: This is a common CHD, accounting for 13% of all congenital heart defects. It occurs in approximately 2 out of every 1000 live births worldwide.

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