30 Days of PH: My Son’s Struggle With PH and VSD in the Philippines

Marian Parame takes a photo with her son, 4-year-old John Mark “Maccoy” Gabriel. (Photo courtesy of Marian Parame)

Day 5 of 30

This is Marian Parame’s story:

I want to share the story of my own PH/heart warrior: my 4-year-old son, John Mark Gabriel, whom we call Maccoy. He was diagnosed at 1 week with ventricular septal defect or VSD, a hole in the heart that’s a type of congenital heart disease. 

Following surgery, we learned he had severe pulmonary arterial hypertension. The doctor prescribed Bosentan and Sildenafil to decrease the excessive pressure caused by VSD. 

In June 2021, Maccoy underwent cardiac catheterization. The new cardiologist said he was’t eligible for an operation because his VSD causes high pressure in the blood vessels and lungs, and could cause imminent death. He also stopped Bosentan, saying it’s expensive and not required for our child’s condition, given he’s inoperable; he continued on Sildenafil. 

In April 2022, a second echo showed the pressures had gone down, making our son eligible for a VSD operation. We immediately approached three different hospitals in three cities. The new cardiologist wanted to perform another cardiac catheterization before surgery. To our dismay, the VSD pressures had gone back up, canceling any plan for surgery. 

The cardiac surgeon assures us there’s still hope for our child, and prescribed Bosentan and Sildenafil for another six months. We want to remain hopeful and provide everything he needs but we are unsure how long we can afford these prescription drugs. 

Life in the Philippines is extremely difficult, especially when your child has VSD. Educational and medical support is scarce, so I rely on online information on how to care for Maccoy’s healthcare needs. 

It’s my ardent prayer that one day I will meet a specialist who can support us and educate us on PH/PAH. Although it’s practically and financially challenging, we want to do everything to provide for our son and help him heal. The costs of a six-month supply of Bosentan and Sildenafil are around 60,000 Philippine pesos (about $1,030 US). My husband’s daily income as a driver is P250 pesos (about $4.30). Despite this, we continue to supply these necessary medications for our son.

Our prayer is that our son receives the operation someday, so he can grow up and live an ordinary life. 

Pulmonary Hypertension News’ 30 Days of PH campaign will publish one story per day for PH Awareness Month in November. Follow us on Facebook and Instagram for more stories like this, using the hashtag #30DaysofPH, or read the full series.