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

We share with you not one, but two Heart Warriors of the Week! Meet Rachel Owens and Eli Hunter Brooks Owens, a mother and son duo who are both living with CHD.

Rachel, born on September 11th, 1987, has primum atrial septal defect and mitral valve cleft. Throughout her journey with CHD, she has undergone two open-heart - an ASD repair and a mitral valve leakage repair - two defibrillator placements because of heart failure/cardiomyopathy, multiple ablations to stop the occurrence of atrial flutter, several cardioversions to return her heart to a normal rhythm, and many catheterizations. She says she is one of the lucky CHD Warriors who have been blessed with shorter recoveries, but she has spent a combined total of many months in the hospital throughout her life.

In the years since Rachel underwent her surgeries, there have been many advancements in the treatment of CHD, and some of her repairs could now be done via catheterization instead of with open-heart surgery.

She is currently only on one medication for her heart, the least amount of heart-related medications she has ever been on (yay!).  She has taken a variety of medications in the past which have changed over the years and will likely continue to change. It is probable she will have to take medication for the duration of her life.

While she doesn’t have any surgeries scheduled at this time, she will need a valve repair in the future, as her mitral valve still has mild to moderate leakage. There will also be more battery changes for her defibrillator.  Her only restriction is also a result of her defibrillator – no contact sports. She faces more difficulties while pregnant, but overall has done well during those times.

When we asked her if there are any worries or challenges she faces being a CHD Warrior, she said she has had some hard years; the biggest worry being cardiac arrhythmias and the problems they have the potential to cause for her down the road.

Rachel describes herself as optimistic, persistent, strong and analytical, adding:

Being a CHD Warrior has taught me to be strong in all areas of my life. I face each surgery and procedure with a victorious spirit through my faith in God. Being able to put my trust in Him has been a tremendous comfort and leads me not to worry. I may be down in moments of difficulty.  There are times my heart rate will soar above 200 with nothing to correct it but a cardioversion; it’s a terrible feeling, physically, but I am thankful for my journey and it has not altered my being able to live a full and enjoyable life!

 

Eli was diagnosed prenatally around the 20-week mark with primum atrial septal defect, mitral valve cleft, pulmonary stenosis and possible abnormal right coronary artery from left sinus.  Surgeons will take a better look in his upcoming surgery to clarify his diagnosis.

He was born on December 21st, 2018 and has been curious, sweet, mellow, and joyful ever since!

Eli underwent a catheterization to correct his pulmonary stenosis with a ballooning procedure, spending four days in the hospital. He will be having an open-heart surgery sometime after his first birthday but it hasn't been scheduled yet.

Luckily, Eli doesn’t face too many restrictions as a result of his heart conditions and lives a relatively happy and healthy life. However, if he does end up having an abnormal right coronary artery from left sinus, he will be restricted in what sports he can play until he has a successful surgery to correct it.

Because of Rachel’s unique position of being both a CHD patient and a parent to a Heart Warrior, she says she has a deep understanding of what it is like to be a fighter. Most of their family’s challenges are just her own worry for her son and hoping that he has a healthy and fulfilling life. Because Eli hasn’t had his open-heart surgery yet, she is fearful of what it will be like to be the parent and not the patient in that situation.

Rachel says Eli’s smile and sweet perfection inspires her and lets her know that everything is going to be okay, adding “there is always sunshine even in the midst of a storm. His calmness and demeanor, even as a baby, lets me know that he will be a strong and brave warrior. If you have a child that is a Heart Warrior or you are a Heart Warrior yourself, just remain strong and determined for yourself or your child. It will not always be easy but your spirit and voice will become their inner voice and strength!

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 disease. It occurs in approximately 2 out of every 1000 live births worldwide.

Mitral Valve Regurgitation

Anatomy: When the mitral valve, which connects the left atrium and left ventricle, allows a leakage of blood backward through the mitral valve each time the left ventricle contracts. This allows blood to flow in two directions during the contraction. Some blood flows from the ventricle through the aortic valve — as it should — and some blood flows back into the atrium.

Complications: Leakage can increase blood volume and pressure in the area. The increased blood pressure in the left atrium can increase pressure in the pulmonary veins which connect the lungs to the heart. If regurgitation is severe, increased pressure may result in congestion (or fluid build-up) in the lungs.

Symptoms: Palpitations (fluttering or rapid heartbeat), heart murmur, fatigue during activity, swollen feet or ankles, and shortness of breath.

Treatment: Some cased don’t require treatment, but options for those that do include management with medicine and valve repair or replacement via open-heart surgery or catheterization.

Prevalence: This condition is more common in those 50+, prevalence in congenital cases is unknown.

Pulmonary Stenosis

Anatomy: This defect involves the narrowing of the pulmonary valve. There are multiple forms of this defect:

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

Supravalvar Pulmonary Stenosis
The portion of the pulmonary artery just above the pulmonary valve is narrowed.

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

Branch Peripheral Pulmonic Stenosis
The right or left pulmonary artery is narrowed, or both may be narrowed.

Complications: This creates an obstruction when blood tries to flow from the right ventricle to the pulmonary artery to receive oxygen from the lungs. With pulmonary atresia/stenosis, the pulmonary valve cannot fully open. Thus, the heart must work harder to pump blood through the valve.  As a result, not enough blood reaches the lungs and oxygen saturations are low throughout the body.

Symptoms: Abdominal bloating, bluish color to the skin (cyanosis), chest pain, fainting, fatigue, poor weight gain or failure to thrive in infants with severe blockage, and shortness of breath.

Treatment: Depending on the severity of the condition there are a variety of treatment options, including balloon catheterization and valve replacement via open-heart surgery.

Prevalence: This defect accounts for approximately 10% of all CHD’s, occurring in 1 out of every 1000 live births worldwide.

Leave a comment