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Matthew's Story

Matthew was born 8 weeks premature in May 2005, weighing in at 4lbs 1oz. We found out four days later that he had this very rare and life threatening four fold heart defect. Matthew was born without a pulmonary artery.

He spent the next 9 weeks in the NICU as a "grower and a feeder." In July, 2005 we were told he could "no longer be medically managed" due to the uncontrolled blood flow to his lungs and needed his heart surgery. He was intubated and flown up to LPCH @ Stanford. He underwent a second heart cath and found that he had four collateral arteries pouring blood into his lungs, like an open spigot.

Finally, in July, 2005 Dr. Frank Hanley performed a complete "Unifocalization." Dr. Hanley pioneered and developed this surgery. Matthew was 2-1/2 months old and weighed only 6 pounds.

Unfortunately, Matthew's lungs were so badly damaged that he spent the next couple months on a ventilator in the CVICU. We were told that Matthew would need a trach and would most likely be on a ventilator for a year or two. Luckily for us, Stanford allowed Matthew to go on a fairly new breathing device called Vapotherm at a high liter flow and we were able to keep him from getting a trach. He was placed on regular oxygen 24/7. After a long and difficult five and a half months spent in the hospital... we were discharged at the end of October 2005.

Matthew had a third heart cath a couple days before Thanksgiving 2005, we were told Matthew would be needing a conduit change at any time. His pulmonary arteries were also narrowing. We were shocked and disappointed. He had already outgrown his new "pulmonary artery." March 2006 we were back at LPCH @ Stanford having a conduit change and a PA plasty performed by the world famous Dr. Frank Hanley.

Matthew receives the best and most loving care from Dr. Craig Nakamura and his awesome staff at the Children's Lung Center! He could not have received better care from any other doctor and staff. We will forever be grateful to Dr. Craig and his staff, for they are the faces of God. Matthew is no longer on oxygen. Matthew is now 2 1/2 years old and is doing good. Matthew will need conduit changes throughout his life.
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