30 days of PH: Pulmonary hypertension in children hits home

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

Day 5 of 30

Here is the story of Marian Parame:

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

Following the operation, we learned that he suffered from severe pulmonary arterial hypertension. The doctor prescribed bosentan and sildenafil to decrease the excessive pressure caused by the VSD.

In June 2021, Maccoy underwent cardiac catheterization. The new cardiologist said he was not eligible for surgery because his VSD is causing high pressure in blood vessels and lungs and could lead to near death. He also discontinued Bosentan, saying it’s expensive and not necessary for our child’s condition, as it is inoperable; he continued on Sildenafil.

In April 2022, a second echo showed pressures had diminished, making our son eligible for VSD surgery. We immediately approached three different hospitals in three cities. The new cardiologist wanted to perform another heart catheterization before the surgery. Much to our dismay, the VSD pressures had risen, canceling any plans for surgery.

The cardiac surgeon assures us that there is still hope for our child and prescribes Bosentan and Sildenafil for another six months. We want to keep hope alive and provide everything he needs, but we don’t know 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 take care of Maccoy’s health needs.

I fervently pray that one day I will meet a specialist who can support and educate us about PH/PAH. Although it is practically and financially difficult, we want to do everything to support our son and help him heal. The cost of a six-month supply of bosentan and sildenafil is approximately 60,000 Philippine pesos (about US$1,030). My husband’s daily income as a driver is P250 pesos (about $4.30). Despite this, we continue to provide these necessary medicines to our son.

Our prayer is that our son will receive the operation one day, so that he can grow up and live an ordinary life.

Pulmonary Hypertension News’ 30 Days of PH campaign will publish one article a day for PH Awareness Month in November. follow us on Facebook and instagram for more stories like this, use the hashtag #30DaysofPH, or read the full series.

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