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 baby boy 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.
Thank you for visiting our team page! Every 15 minutes, a baby is born with a congenital heart defect, making CHD most common birth defect. The Congenital Heart Walk is dedicated to raising funds to support The Children's Heart Foundation's mission: to advance the diagnosis, treatment, and prevention of CHDs by funding the most promising research.
Will you join us? By supporting our team or joining us in our walk, you're supporting research that will help save and improve the lives of babies born, and children and adults living, with CHDs. Thank you!
Regards,
Arpit and Purvi
Q & A :
What is the meaning of our son's name - Apurva?
The Sanskrit word apūrva in its common usage means 'one of a kind', 'unique', 'like none-other', 'like never before' or 'unprecedented', it is something not foreseen, unpreceded, unprecedented, never seen before; in brief it means that which did not exist before or is newly born.
What is Congenital Heart Defect (CHD)?
Congenital heart defects are the most common birth defect in the nation, impacting ONE in every 110 babies each year.
CHDs are present at birth and can affect the structure of a baby’s heart and the way it works. They can affect how blood flows through the heart and out to the rest of the body. CHDs can vary from mild (such as a small hole in the heart) to severe (such as missing or poorly formed parts of the heart).
About 1 in 4 babies born with a heart defect has a critical CHD (also known as critical congenital heart defect).1 Babies with a critical CHD need surgery or other procedures in the first year of life.
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.