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Meet Jonah. Jonah entered the world four weeks premature, on February 10th, 2022. Before he was even born, my partner Demetrius and I learned that Jonah would be born with a serious heart defect and that open heart surgery would be imminent and life-saving.
As a first time mother, I anticipated Jonah's arrival with excitement but also trepidation and worry. Luckily, Jonah's birth was uncomplicated and he has been stable enough the first few months of life to allow his many, many doctors to fully investigate his heart defect.
Jonah’s official diagnosis is now pulmonary atresia with major aortopulmonary collateral arteries (MAPCAs) and a ventricular septum defect (VSD). The simplest way to explain Jonah’s heart is to say that he doesn’t have a pulmonary artery. And the vital pulmonary artery is how blood travels to the lungs. Because Jonah’s never developed, his body created other but unsustainable pathways for that blood through small capillaries. Jonah's heart also has a VSD, which is a hole between the lower chambers of the heart that enables oxygenated and unoxygenated blood to mix. If Jonah's heart is left unrepaired, he could survive for a while. But his oxygen levels would continue to decrease and his heart would tire out early in life. As one cardiologist explained it to us, Jonah's heart is working like an Olympic athlete's to accomplish simple tasks like eating.
Up until the 1990s Jonah’s condition was considered inoperable. If he had been born then, we would have been sent home and told to enjoy the time we had together. But Dr. Frank Hanley at Stanford pioneered an operation that can save the lives of babies like Jonah. Dr. Hanley and his team perform more than 300 complicated heart surgeries each year, and his expertise and confidence gives our family hope and stability. The operations Jonah needs will create a pulmonary artery system and repair the hole in the lower chamber of his heart.
The money we hope to raise here would cover the cost of our family's travel to Stanford's Lucille Packard Children's Hospital in California, as well as the living expenses and bills that would accumulate during the time we spend there supporting Jonah and his team through the preliminary tests and observations needed, the operation itself, and the time to monitor Jonah's recovery that would follow.
In the short months since Jonah was born, we have been overwhelmed by the generosity of family and friends who have already done so much. But Jonah's needs are great, and we would be forever grateful for anything you can donate to support this next leg of his journey. We treasure the love, support, prayers, and thoughts of our friends, family, and our wider community. Thank you for your time and consideration. Please do feel free to share this page with your networks!
If you’d like to read more (and see more photos of our adorable Jonah!) I keep a journal about Jonah’s journey here:
https://www.caringbridge.org/visit/jonahsheartjourney
As a first time mother, I anticipated Jonah's arrival with excitement but also trepidation and worry. Luckily, Jonah's birth was uncomplicated and he has been stable enough the first few months of life to allow his many, many doctors to fully investigate his heart defect.
Jonah’s official diagnosis is now pulmonary atresia with major aortopulmonary collateral arteries (MAPCAs) and a ventricular septum defect (VSD). The simplest way to explain Jonah’s heart is to say that he doesn’t have a pulmonary artery. And the vital pulmonary artery is how blood travels to the lungs. Because Jonah’s never developed, his body created other but unsustainable pathways for that blood through small capillaries. Jonah's heart also has a VSD, which is a hole between the lower chambers of the heart that enables oxygenated and unoxygenated blood to mix. If Jonah's heart is left unrepaired, he could survive for a while. But his oxygen levels would continue to decrease and his heart would tire out early in life. As one cardiologist explained it to us, Jonah's heart is working like an Olympic athlete's to accomplish simple tasks like eating.
Up until the 1990s Jonah’s condition was considered inoperable. If he had been born then, we would have been sent home and told to enjoy the time we had together. But Dr. Frank Hanley at Stanford pioneered an operation that can save the lives of babies like Jonah. Dr. Hanley and his team perform more than 300 complicated heart surgeries each year, and his expertise and confidence gives our family hope and stability. The operations Jonah needs will create a pulmonary artery system and repair the hole in the lower chamber of his heart.
The money we hope to raise here would cover the cost of our family's travel to Stanford's Lucille Packard Children's Hospital in California, as well as the living expenses and bills that would accumulate during the time we spend there supporting Jonah and his team through the preliminary tests and observations needed, the operation itself, and the time to monitor Jonah's recovery that would follow.
In the short months since Jonah was born, we have been overwhelmed by the generosity of family and friends who have already done so much. But Jonah's needs are great, and we would be forever grateful for anything you can donate to support this next leg of his journey. We treasure the love, support, prayers, and thoughts of our friends, family, and our wider community. Thank you for your time and consideration. Please do feel free to share this page with your networks!
If you’d like to read more (and see more photos of our adorable Jonah!) I keep a journal about Jonah’s journey here:
https://www.caringbridge.org/visit/jonahsheartjourney