She was born with a hole in her heart. When you come across this line, your imagination fires up conjuring terrifying images in your mind. Most families of patients also go through a traumatic experience when they hear that a loved one has a heart defect as they are unaware of the problem itself. Understanding it can go a long way in helping you beat it.
What is a congenital heart defect?
A congenital heart defect is a problem with the structure of the heart that occurs by birth. These defects happen because of incomplete or abnormal development of the fetus' heart during the very early weeks of pregnancy. They can be in the arteries and veins near the heart, or even in the valves and walls of the heart. They cause trouble in blood circulation through the heart, sometimes blocking it, slowing it down or even pushing it in the wrong direction.
What causes these defects in the heart?
You may often think you might have done something during your pregnancy to cause this issue. The truth is that doctors are not entirely sure why congenital heart defects occur. Sometimes it is hereditary. If you were born with it, it is very likely that your child might have it.
Certain studies show that smoking during pregnancy has also caused congenital heart defects in children, often hole in the heart.
Some congenital heart defects are associated with genetic disorders like Down Syndrome.
What are the symptoms of a congenital heart defect?
In severe cases, symptoms appear shortly after birth. However, sometimes, a person can live without knowing he has a heart defect as symptoms do not appear until teenage or adulthood.
6-year-old Hari Darshan’s heart problem started with a high fever and terrible leg pain. Soon, it escalated to breathing trouble and chest pain, so much that Hari needed to be in the ICU. He was diagnosed with two holes in the septum.
General symptoms of congenital heart defect include excessive sweating, extreme tiredness and fatigue, poor feeding, poor weight, rapid heartbeat, rapid breathing, shortness of breath, chest pain, and a blue tinge to the skin (cyanosis). These symptoms lead to complications like:
problems with growth and development
repeated respiratory tract infections (RTIs) – infections of the sinuses, throat, airways or lungs
heart infection (endocarditis)
pulmonary hypertension – raised blood pressure within the blood vessels that supply the lungs (pulmonary arteries)
heart failure – where the heart is unable to efficiently pump enough blood around the body
When the symptoms get severe, families have an urgent need for funds to rush their loved ones into surgery. When they lack time to prepare, most families need financial assistance. Crowdfunding is the most practical way to raise funds for yourself or your loved ones when diagnosed with a congenital heart defect.
For the first year of his life, Sayan was a completely healthy baby (or so his parents thought). Before they knew it, he became too weak to walk or even stand. He often felt short of breath. It was then they discovered that he had a congenital heart defect.
What are the types of congenital heart defect?
Congenital valve defect refers to a range of possible heart defects that occur by birth.
Aortic valve stenosis– the aortic valve that controls the flow of blood out of the main pumping chamber of the heart (the left ventricle) to the body's main artery (the aorta) is narrowed.
Coarctation of the aorta – where the aorta has a narrowing, which means that less blood can flow through it.
Ebstein's anomaly – where the valve on the right side of the heart (the tricuspid valve), which separates the right atrium and right ventricle, does not develop properly.
Patent ductus arteriosus– where the connection between pulmonary artery and aorta does not close after birth.
Pulmonary valve stenosis– where the pulmonary valve, which controls the flow of blood out of the right ventricle to the lungs, is narrower than normal.
Septal defects - where there's a hole in the wall (septum) between the main chambers of the heart.
Single ventricle defects - where only one of the ventricles develops properly.
Tetralogy of Fallot – This includes a combination of defects including ventricular septal defect, pulmonary stenosis, right ventricular hypertrophy (where the muscle of the right ventricle is thickened), displaced aorta – where the aorta isn't in its usual position coming out of the heart
Total (or partial) anomalous pulmonary venous connection (TAPVC) - when the four veins that take oxygenated blood from the lungs to the left side of the heart are all connected to the right side of the heart.
Transposition of the great arteries - where the pulmonary artery (lung artery) and the aorta are "swapped over" and are connected to the wrong ventricle. This leads to blood that's low in oxygen being pumped around the body.
Truncus arteriosus – where the two main arteries (pulmonary artery and aorta) don't develop properly and remain as a single vessel.
The symptoms were severe in 4-month-old Adriti’s case. “She cries all day and night. When it happens, her lips, fingers and toes turn blue! It scares us to see our baby girl suffocating right in front of our eyes.” She too was born with a severe congenital heart defect.
What are the various treatments for congenital heart defect
Treatment for congenital heart disease is specific to the defect. Mild heart conditions can be managed with regular follow-ups, a sedentary lifestyle, and medication.
Severe defects need surgery and with this comes long-term monitoring of the heart. Sometimes medication is coupled with surgery to relieve symptoms and stabilize the condition. Usually, medicines help to ease breathing, slow down heartbeat and increase the pumping efficiency.
Families who do not have access to proper medical facilities, mostly in rural areas, or those from low-income backgrounds, often find themselves in an emergency. Since the child is not diagnosed at birth, or they are unaware of the implications, they are unprepared to deal with serious complications. When the time comes to rush their loved one into surgery, these families need financial assistance. Crowdfunding is probably the quickest growing financing option for such patients with congenital heart disease.
Through crowdfunding, the family of the patient can relieve some of the financial strain of the surgery/medication by asking for the generous and compassionate support of the community.
How to use crowdfunding for congenital heart treatment?
Crowdfunding platforms like Milaap have become a popular option for families who are in immediate need of financial support especially when a loved one needs a heart surgery. Ketan was diagnosed with Tetralogy of Fallot when he was born. His mother abandoned him because of his defective heart. Ketan’s father, a Samosa vendor, struggled day and night to save money for a surgery. Ketan’s condition got worse over months, and when he was about 2 years old, his father had less than a week to consent to a surgery. Crowdfunding helped Yogesh raise over Rs. 261,254 in less than 24 hours. Ketan had his surgery the next day.
“He is alive thanks to you! I will always be grateful!” says Yogesh Khandelwal, Ketan’s father.