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

Name: Olivia Juliette Gonzalez

Heart defect(s): aortic stenosis with bicuspid valve, ebstein's anamoly, chromosome 5p deletion

Date of birth: 04/17/2017

Received care at: Children's hospital of Los Angeles

Surgical history: Correction of mal-rotation at a week old and gtube placement on July 12, 2017. Thankfully she has not needed any heart surgeries yet, but she has had 2 surgeries.  Olivia was born with mal-rotation (her intestines didn't develop properly) and at one-week-old, she had surgery to correct it.  While in the NICU, we worked on her feeding but she didn't have the suck/swallow coordination that many infants are born with.  She also didn't tolerate large volumes of liquids at a time which would cause vomiting. Ultimately, it was discovered that she was aspirating so we were given the option to have a g-tube placed.

Time spent in hospital: Olivia was at the NICU for the first three months of her life. Immediately after being discharged, she was re-admitted two times for vomiting.  She has been admitted multiple times since then.  In May of 2018, she was admitted for a cold that became bronchiolitis. Due to her CHD, she is more susceptible to illness; even a simple cold or stomach bug can land her in the hospital.

Future surgeries: We do not anticipate any surgeries at the moment but we know that is a possibility that can change at any given moment.

Fun Fact: She is a happy girl full of life who loves the outdoors. She recently started taking small steps with full support and it gives us hope that someday we will see her running!

A letter to Olivia from her Mom, Mayra:

Olivia, my first born, my big baby,
I love you more than words can describe. You have taught me to be strong through the many adversities we have been through.  You have been through so much in your short lifetime.  I want you to know that I'm proud of you, you are my biggest hero. When you were in the NICU you were so tiny and fragile; I remember I was afraid to hold you because I didn't want to hurt you.  Until one day a nurse said, "Don't think of her as your sick baby, just think of her as your baby." I will never forget those words. From that day forward I knew you needed me to be strong.
This journey hasn't been easy and I have shed many tears. I have had to mourn "the normal life" we haven't had because this is not what I anticipated. Like every new parent, I dreamed of what life with a new baby would be like. Never in a million years did I think of everything I was about to face, but even with that said, I wouldn't trade you for anything in the world. In my eyes, you are perfect.
On our darkest days, I think of all the joy and happiness you have brought into my life. Your contagious smile and the love I see when you look at me outweighs all the heartache I've endured. All the “inch” stones you have accomplished motivate me to keep going and to continue advocating for you.  My biggest dream is to see you walk and talk someday.  You are strong and resilient, do not let anyone tell you otherwise.  You have come so far; I want you to grow up being proud of yourself. Never be ashamed of being you and know that mommy will always be your #1 supporter.
CHD awareness is important because unless you're a CHD Warrior or parent of a CHD Warrior, many people don't understand. I have had people tell me I exaggerate when I don't want to take you out on a really cold day, when you’re sick, or around people that are sick.  They tell me I need to expose you to germs so that "you’re not so delicate.” What they don't understand is that a simple cold can land a CHD Warrior like you in the hospital. If we continue sharing your story, maybe more people will understand that we aren't exaggerating, we are simply protecting you.

 

Olivia’s Defects

Aortic Valve Atresia/Stenosis

Anatomy: The aortic valve, which connects the left ventricle to the aorta, is severely narrowed. There are three common types:

Valvar Aortic Stenosis
The valve leaflets are thickened and/or narrowed.

Supravalvar Aortic Stenosis
Narrowing of the section of the aorta just above the valve that connects the aorta to the heart (aortic valve).

Subvalvar (Infundibular) Aortic Stenosis
The muscle under the valve area is thickened, narrowing the outflow tract from the left ventricle.

Complications: This abnormality restricts the blood flow from the left ventricle to the aorta and may also affect the pressure in the left atrium. As a result, the heart has to pump harder and the body is deprived of oxygen.

Symptoms: Fatigue upon exertion, failure to gain weight, poor or inadequate feeding, breathing problems.

Treatment: Options for aortic valve atresia/stenosis include medical management with medicine, valve replacement via open-heart surgery, or a balloon procedure via catheterization.

Prevalence: Aortic valve atresia/stenosis accounts for approximately 6% of all CHS cases, occurring in 3.8 out of every 10,000 live births worldwide.

Ebstein’s Anomaly

Anatomy: The leaflets of the tricuspid valve are abnormally formed and sit lower in the right ventricle than normal.

Complications: Due to this malformation, blood may leak back through the valve, making your heart work less efficiently and leaving the body with low oxygen saturations. It may also lead to enlargement of the heart or heart failure.

Symptoms: Mild forms may cause no symptoms but patients with more severe cases may experience shortness of breath, especially with exertion, fatigue, heart palpitations or abnormal heart rhythms (arrhythmias), and a bluish discoloration of the lips and skin (cyanosis).

Treatment: Depending on the severity of the case, Ebstein’s anomaly can be treated with medications, surgery or heart transplant.

Prevalence: Occurs in about 1 out of every 20,000 live births, affecting boys and girls equally.

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