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

Meet Marissa Domanico, our Heart Warrior of the Week! We talked with Marissa about all she has undergone throughout her almost 37-year journey with congenital heart disease – her hopes, fears, and the people that help get her through it each and every day.

Save the Heartbeat (STHB): What is your heart defect?

Marissa Domanico (MD): Transposition of the Great Arteries

STHB: When were you born?

MD: July 9, 1982

STHB: Were you diagnosed in-utero? 

MD: No, my mom never had an ultra sound during her pregnancy. I was diagnosed at birth; I stopped breathing after my umbilical cord was cut. I was revived and rushed to another hospital where I was diagnosed [with TGA].

STHB: How many surgeries and procedures have you had?

MD: 6 open heart surgeries, 1 ablation, 1 mitraclip procedure, 2 cardioversions, 2 pacemaker surgeries, multiple cardiac catheterizations, MRI’s, and CT scans, and 1 balloon valvuloplasty.

STHB: What are the names or types of surgeries/procedures you have undergone and what was the purpose of them?

MD: The Senning procedure is an atrial switch open-heart surgery I had at 2.5 months old, it was performed to help mix the oxygenated and de-ogxygentaed blood so that I could stay alive.

The balloon valvuloplasty at 5 years old and open-heart repair at 10 years old was to correct the obstruction of my mitral valve that I was born with.

The pulmonary artery band surgery I had at 24 was to place a band on my pulmonary artery to strengthen my left ventricle in preparation for another arterial switch.

The arterial switch, senning take down, mitral valve repair, and aortic valve replacement took place about a year later. It was such a complex surgery that I was hospitalized for 7 weeks and out of work for 2 years due to complications.

I had another aortic valve replacement and mitral valve repair at 34 where they replaced my bioprosthetic aortic valve with a mechanical valve and repaired my mitral valve for the third time.

I had an ablation to destroy tissue in my heart that was causing arrhythmias, a mitraclip procedure to help lessen leaking of the mitral valve, a mitral valve replacement, a MAZE procedure, and insertion of epicardial pacemaker all at 35 years old.

I previously had 2 other pacemaker surgeries at 26 and 31. Over the years I’ve had 2 cardioversions to help put my heart back into normal rhythm after having arrhythmias.

I’ve lost count of MRI’s, CT scans, and cardiac catheters – these are usually preformed prior to surgery to get more information about my heart in preparation for surgery.

STHB: How much time have you spent in the hospital throughout all of that?

MD: I would say close to a year.

STHB: Do you have any surgeries scheduled?  Will there be a need for more in the future?

MD: Nothing scheduled at the moment, I’m just taking it one day at a time. There will always be a possibility of more open heart surgeries for me, and a transplant could be a possibility too. There will definitely be more maintenance type procedures like replacing pacemaker batteries and caths to see how my heart is functioning.

STHB: Are you currently on any medications as a result of your heart condition?

MD: Yes, I take about 6 different medications.

STHB: Are those something you are temporarily taking or will you have to take them for the rest of your life?

MD: I will be on them for the rest of my life, they’re blood thinners, beta blockers, and diuretics.

STHB: Are there any restrictions you face due to your condition?

MD: I’m on a low sodium diet to help with fluid retention and heart failure. Blood thinners limit the amount of green vegetables I can eat because of vitamin K contact which can thicken the blood. I don’t drink alcohol because it can thin the blood and dehydrate me. I have limits on how much caffeine I can have due to my irregular heartbeat and arrhythmias.

Exercise is challenging because it’s hard to get my heart rate up. I cannot do any contact sports or anything that could cause me to fall and hurt myself (like skydiving or rock climbing), because of the blood thinners. I stopped working full time; it became too exhausting. Most likely I may never be able to get pregnant, my heart wouldn’t be able to handle it.

STHB: Are there any worries or challenges you face being a CHD Warrior?

MD: Definitely PTSD from all of the surgeries and procedures. Not having children of my own. Not being able to be as active as I’d like. Not having a full time job to make money for the things I want to buy and the life I want to live. Being in debt for the rest of my life due to medical bills. The fear that I’ll be back in the hospital for more surgeries/procedures at any moment. Not feeling well most days. Being a financial burden on my family and the fact that they always have to drop everything for me every time I get sick. I will never be “cured,” it’s a never ending battle that I have to live for the rest of my life. I am so scared; I do not want a transplant.

STHB: Is there anything else you want to say about life with CHD?

MD: Being born with CHD has definitely made me stronger. If I can get through all that I’ve been through, I can face any other challenges life throws at me. Life is so very difficult, there are times I want to give up, but I keep fighting no matter how hard it gets. It has made me live a healthier life. I eat very clean and exercise regularly. I don’t drink, smoke, or do drugs. I’ve also been skydiving three times! I might as well do everything I’ve ever wanted after what I’ve been through. I am also lucky to have the best family ever. They are always by side whenever I need them and they are my biggest fans. They have definitely helped me get through my recoveries and get to where I am today. Especially my mom, she is the best mom ever. She is the only person who truly understands what I’ve been through since I was born. The only person I turn to when I’m upset or scared. Nobody else gets me like she does. My three cats bring so much joy to my life, they lay with me whenever I’m recovering or not feeling well. I wish I didn’t have CHD, but I do feel lucky to have what I have. I will never give up and I will always keep fighting!

About Marissa’s Heart Defect

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 some babies with TGA as it allows some oxygen-poor blood to mix with oxygen-rich blood, enabling the body to receive at least some oxygen. Often times, a balloon procedure is performed to enlarge or create this hole to improve the baby’s oxygen levels. Doctors go in through an artery in the leg and use a small medical instrument to create a larger hole between the ventricles.

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.

Comments

John Corral

John Corral said:

Marissa has been an incredibly important person in my life and I. Can attest that she is THE strongest, most caring, beautiful and genuine person I know. I am very greatfull for all her doctors that have helped her stay alive so long.

Rita Domanico

Rita Domanico said:

My sweet Marissa is truly an inspiration to our family. We all love her very much, she is a brave young woman. I would give my own heart to her if I could.

Rachelle

Rachelle said:

Power woman.
Big hugh from the Netherlands.
I am 45 en born with a tga.
recognizable story.
But we are strong. Carpe diem.
All the best doe you .

Debra Domanico Fornsaglio

Debra Domanico Fornsaglio said:

I have never met my beautiful cousin Marissa from CA but her Grandmother, my Aunt Rita, has told me everything about her. Her courage and her strength to keep fighting this and moving forward!! Praying that Our Lord continues to give her everything she needs and the peace that only He can give. I love you sweet and precious Marissa!!

Lee domanico

Lee domanico said:

Marissa my niece is an amazing and strong person I will continue to do everything I can to help her

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