My 2 year old son calls himself Ben-ben.
His name is Ben Eman Nikolai. We named him such because my husband’s father’s name was Benjamin and Nikolai means “victory of the people.” His name would have been just Ben Nikolai if not for Eman: I love her and she was supposed to be my child’s godmother. She passed away while I was pregnant with Ben.
He was born July 1, 2006 at the Philippine General Hospital. He was a healthy 7.7lbs. baby boy; his cries echo through the Pediatric Wing whenever he wants to be fed. We went home 2 days after I gave birth clueless that he has a congenital heart disease.
During his first routine check-up, his pediatrician Dr. Benilda Sanchez, heard a heart murmur. She explained that it could be “innocent” but nonetheless referred us to a Pediatric Cardiologist, Dr. Jonas del Rosario. Upon hearing my son’s heartbeat, he said that he has Ventricular Septal Defect. He instructed us to have my son’s 2d-echo taken.
It turns out that the “hole in his heart” was moderate in size. It was hard to tell at that point if it were to close on its own. He prescribed medications - Digoxin and Furosemide so that this defect would not complicate other functions of the heart and lungs. Nevertheless, he reiterated that it would just either close on its own or operation would be necessary. We all hoped that it would be the former since Ben is a very healthy child and he did not show any signs of illness.
May 2007, I was regularized at HSBC; hence, my son was already covered by our HMO. I brought him to the only available Pediatric Cardiologist affiliated with our HMO in the area - Dr. Jhuliet Balderas. She shares the same sentiments with Dr. del Rosario.
Ben’s first birthday passed. His 2d-echo showed that nothing much changed with his heart condition. We were advised to wait another year since the defect might be asymptotic.
October 2008, his latest 2d-echo was taken. It showed that though the hole diminished in size, his aortic valve is already leaking. It means that the pressure brought about by the hole’s existence complicated another part of his heart. Right after the said diagnostic procedure, the doctor recommended open heart surgery when Ben turns 2 and a half years old. This means January 2009. Later on, we were advised that due to the surgeon’s availability, Ben would undergo surgery on December 2008.
I really cannot describe the anguish I felt during at that very moment. I understood everything the doctor said - when the next check-up’s going to be, what his medications would be while waiting for the operation - but the thought of my son undergoing such invasive and risky procedure really stressed me. I was, and still am, very scared.
I really hope that other non-invasive procedures are available for his case here in the Philippines, but I’m not sure if there are catheterization techniques being developed.
To date, we are still raising funds so that my son could undergo the procedure. If there is anyone there who could help us contact charitable institutions or donors, please inform us. Of course, your donations and pledges are also very much welcome.
Lastly, I would like to thank everyone supporting us in this ordeal. This is a very tough time for our family. Your unwavering support helps us in coping with this situation. Let us hope and pray that Ben’s operation would go smoothly and successfully.
Contact Ben’s parents - Tin and JR at +639282202982, firstname.lastname@example.org