Murphy was born on September 7th, 2012.  At the time, there was no indication of his congenital heart defects, but as time went on it became apparent that something was not right.  On February 14th, 2013 (Valentine's Day) we learned just what was going on.  Murphy had a rare and often lethal congenital heart defect called Pulmonary Vein Stenosis.  This has caused other issues including pulmonary hypertension, chronic lung disease and failure to thrive (meaning he does not gain weight as he should.)  Murphy also has GERD and hearing loss.  At this time, Murphy has undergone 4 cardiac caths with angioplasty to dilate his pulmonary veins which kept him alive, had a Nissen Fundoplication with a G-tube and on July 2nd 2013 had his bilateral lung transplant!  Murphy remains in the Cardiac Intensive Care Unit at The Children's Hospital of Philadelphia right now.  We are waiting for him to take his first unassisted breath and begin his new PVS free life!!!  There are many challenges associated with transplant and there are many battles yet to face, but Murphy now has a chance to live his life.

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Join the Battle against Pulmonary Stenosis and help us get Murphy a new pair of lungs.

What is Pulmonary Vein Stenosis?

Pulmonary Vein Stenosis is a rare (1.7 per 100,000 children 1) and often lethal congenital heart defect. Each person has 4 pulmonary veins. Two to each lung. In pulmonary Vein Stenosis the veins have an excessive overgrowth that is not well understood in the medical community. When the pulmoanry veins grow closed, the heart must work extra hard to pump blood through the veins to the lungs where the blood is oxygenated. This causes low oxygen saturation in the blood and damage to the heart. While many procedures have been attempted to control this disease, none have been proven to be overly successful.

The only way to treat Pulmonary Vein Stenosis is to use angioplasty during cardiac caths to dilate the veins and hope the veins stop growing closed or wait for lung transplant. Some success has been found with stints although they often do not work for this disease and can cause other problems and by using suture-less repair (some children are not a viable candidate for this surgery and it is unsuccessful for many others.) Boston Children's Hospital is also currently running a clinical trial using chemotherapy drugs but the study is too new to produce any results at this time.