Arriving at Vanderbilt Children’s Hospital shortly after sunrise on June 17, 2015 for a heart catheter procedure, we would finally be confirming Jonah’s diagnosis for pulmonary hypertension (PH) and how we would treat it. Scheduled for three hours, we planned a possible overnight stay before he would be released for home.
Jonah had hardly enjoyed a drop of his Grape Nerds Slush the night before. He was typically fearless, scared of nothing... except needles. And that morning, even after explaining again how the procedure was necessary to make him better, Jonah had worked himself into a state of nervous nausea. Mommy handed him her iPad and he settled to play his favorite games as we sat in the waiting room.
Before this day, we had begun exploring a growth hormone option for Jonah the previous year because of his small stature. An endocrinologist visit prompted an echocardiogram because something didn’t sound quite right. The cardiologist routed us to a pulmonary doctor at Vanderbilt in January 2015 who also observed signs of PH. We were handed a glimmer of hope when the pulmonologist explained that we caught it early because he wasn’t symptomatic beyond his asthma that we had treated for years.
Not once did Jonah rouse emotions of sympathy. He wasn’t known for being a suffering child weakened by disease. The pulmonary hypertension was hidden behind countless smiles, playful mischief and unyielding affection. But during the week’s leading to the examination, we began to notice Jonah was getting winded easier and he played less.
By the time he was ready to be transported to the procedure room, Jonah was tired. His heart had raced all morn due to the anxiety and now his body wanted to rest. We walked beside his bed as far as we were allowed and then kissed him before he was wheeled away.
After receiving anesthesia, Jonah’s vitals remained within acceptable limits. But 10 minutes later, before the catheter was introduced to his body, his heart succumbed to the stress we never knew; his laughter and love for life had fooled us all. After 30 minutes of CPR, he was placed on life support where he would remain until the doctors were able to analyze brain damage and his inability to maintain a heartbeat without assistance.
On June 21, 2015, three months and one day shy of Jonah’s 11th birthday, we said goodbye to a beautiful life. Jonah had experienced a pulmonary hypertension crisis and would not be returning home.
Disease in its legion of forms robs us every day of our joymakers. No parent ever should experience it. We can’t introduce anyone to Jonah any longer, but he is still touching countless lives today.
Since the loss of Jonah in 2015, Mommy and Daddy have been relentless in building awareness and raising support for pediatric research and treatment of pulmonary hypertension. Partnering with the Pulmonary Hypertension Association, two annual events are held each year in memory of Jonah so that parents may one day will not have to say goodbye too soon to their child as a result of this devastating disease.
The Pulmonary Hypertension Association (PHA) provides many ways to give, including supporting PHA with a general gift, honoring the memory of a loved one with a memorial gift or helping keep hope alive by making a monthly gift.
Naming the Pulmonary Hypertension Association as the recipient of memorial gifts in Jonah Guider’s name honors his fight while also uniting friends and family in making strides for all those touched by pulmonary hypertension.
The heart, more specifically the right ventricle, first pumps oxygen-depleted blood through the lungs so the fluid can “collect” the oxygen it needs to provide every living cell, tissue and organ of the body the oxygenated blood they need to function.
Pulmonary Hypertension (PH or PHT) is increased blood pressure within the blood vessels of the lungs as a result of narrowing of the vessels. The right side of the heart has to work harder to push blood through these narrowed vessels and over time the heart becomes weaker. Heart failure can occur when it becomes too weak to continue pumping against the resistance.
The symptoms for all types of PH may be similar and typically become more severe as the disease progresses. Symptoms may include:
Although there is currently no cure for PH, there are treatment options available. Unfortunately, options are more limited for children. Treatments include conventional medical therapies and oral, inhaled, intravenous (into the vein) and subcutaneous (into the skin) options. Depending on the severity of PH, a heart and/or lung transplant may also be an option.
For more information on pulmonary hypertension and the PHight against the disease, visit https://phassociation.org/.