Even the smallest Person can change the course of the future.
Update 5/17/22 : Thank you Ohana for the overwhelming response to our cause to spread CHD Awareness in loving memory of our Baby Apurva. We surpassed our team goal within few hours of us posting about it. We look forward to seeing you at the Heart Walk and support us cross the finish line. While this may be just a walk in the park, for us it is anything but…
We didn’t come this far to only come this far. Our motivation has been If you reach your GOAL: SET A BIGGER GOAL. In that spirit, we are increasing our team goal.
Our Story - On 02/26/2022, our sweet boy Apurva came into the world and changed our lives forever. A bundle of joy with an infectious smile and beautiful eyes that look deep into your soul. Apurva was a brave heart warrior and fought very hard to stay with us. His heart could not keep up with his abundant energy. He got his angel wings on 03/29/2022. Apurva gave us a lifetime of love and memories during his short time on earth. We will miss Apurva all of our life but we want to channel this sadness and grief into a purpose, his life into a legacy and spread his light and joy.
We had no idea about Congenital Heart Defect (CHD) until Apurva was diagnosed with it ( HRHS - PA/IVS + RVDCC ) and we hope our experience might help somebody else who is diagnosed with the same in future… CHD affects 1 in 100 newborns ( Not all are as critical as Apurva’s diagnosis though) and even though science has progressed so much, nobody knows why CHD’s occur.
Congenital means present at birth. Only 15% CHD’s are associated with genetics, 85% have no known cause. We very much wish to know the answer to - Why did our baby Apurva have CHD?... We got the genetic testing done as well and it came back with no association. We belong in the 85%. Having the answer to our question might have changed Apurva’s entire treatment plan and maybe he would have been here with us today.
We are participating in HeartWalk to raise Awareness for Congenital Heart Defect (CHD) in loving memory of our precious son Apurva Macwan - Please join us in raising awareness!
Awareness leads to funding.
Funding leads to research.
Research leads to technology.
Technology leads to hope.
Hope for the future, for the kids and parents who will face the same diagnosis as us.
We would love it if you can become a member of our Ohana and join us for the heartwalk on May 22, 2022 at Griffith Park. Please click on the JOIN TEAM link to register today. It is a free event to walk for a wonderful cause. We walk in hopes to raise funds for more CHD Research so that other Parents do not have to go through the heart wrenching pain of losing a child.
Thank you in advance for your support!
Arpit and Purvi
What is the meaning of the name Apurva?
We named our baby boy Apurva - It is a combination of our names (Arpit and Purvi ) . It also means 'one of a kind', 'unique', 'unprecedented'.
What is Congenital Heart Defect (CHD)?
● Congenital heart defects (CHDs) are problems present at birth that affect the structure and function of the heart. There are many types of CHDs, which can affect the lining, blood vessels, chambers, and valves of the heart.
● CHDs are the #1 birth defect in the United States, affecting nearly 1 in every 110 babies born, equivalent to a baby born about every 15 minutes and approximately 40,000 each year in the U.S. alone.
● CHDs are the leading cause of birth defect-related deaths.
● Approximately 25% of children born with a CHD will need heart surgery or other interventions to survive.
● Surgery can help to repair some defects, but many individuals with CHDs require additional operation(s) and/or medication.
● Though 85% of babies born with a CHD now live to at least age 18, children born with more critical forms of CHDs are less likely to reach adulthood.
● CHD patients may face lifelong health problems including growth and eating issues, developmental delays, difficulty with exercise, heart rhythm problems, heart failure, sudden cardiac arrest, or stroke. About 20% to 30% of individuals with CHD have other birth defects or genetic disorders.
What is HRHS - PA/IVS + RVDCC?
HRHS - Hypoplastic Right Heart Syndrome
PA/IVS - Pulmonary Atresia with Intact Ventricular Septum
RVDCC - Right Ventricle dependent Coronary Circulation
Pulmonary atresia is a rare heart problem present at birth. It is a Critical congenital heart defect. In pulmonary atresia, the valve between the heart and lungs (pulmonary valve) isn't fully developed. Blood can't flow from the right lower heart chamber (right ventricle) to the lungs. In pulmonary atresia with intact ventricular septum (PA/IVS), there isn't a hole between the two pumping chambers of the heart. A newborn with pulmonary atresia doesn't get enough oxygen in the blood. They need immediate treatment, at a medical center with pediatric cardiac surgeons and other health care providers who have experience with complex congenital heart disease and pediatric care. Treatment for pulmonary atresia with intact ventricular septum includes a combination of medication, procedures and surgeries.
In a normal heart, Coronary Arteries are supplied blood via Aorta (highest pressure in our body), but in some babies with PA/IVS - due to Right Ventricle blood flow obstruction, Right Ventricle has a very high pressure as well. In some cases of PA/IVS, some Coronary arteries become dependent on right ventricle pressure to keep the heart pumping - that in a nutshell is RVDCC.
What does 'Ohana' mean?
The ancient Hawaiian term ohana means family, but probably not in the way you typically use it. Ohana speaks to the concept of a larger family that is not necessarily connected by blood. A person’s ohana can include their friends, neighbors, or anyone else who is special in their life.
An ohana is special. The people within it are bound together by genuine compassion, culture, support, loyalty, and love for each other.
To become a part of someone’s ohana is a great honor.