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Robbie's CDH Fight
Feb 10, 2017 Latest post:
Aug 25, 2017
Robbie was born on February 20, 2017. He weighed 8 pounds. Robbie was diagnosed at 21 weeks in utero with a Congenital Diaphragmatic Hernia also known as CDH. It is a birth defect where there is an opening in the muscle that helps you breathe, called the diaphram. The opening can be on the right or left side, in Robbie's case the opening was on the left side. The contents of his belly, including the stomach, spleen, liver, bowel and intestines went into his chest with all that being said Robbie's heart was pushed over to the right side of his chest which compromised both of his lungs from developing. He has been diagnosed with Atelectasis (complete or partial collapse of a lung or a section (lobe) of a lung). The upper lobe of his left lung is completely closed and his right lung is partially collapsed. He also has Pulmonary Artery Hypertension (PAH) a condition affecting the heart and lungs. People who have PAH develop high blood pressure (hypertension) in the arteries of their lungs (the pulmonary arteries). The pulmonary arteries carry blood from the heart to the lungs; there, the blood picks up oxygen needed for physical activity. In order to push enough blood through pulmonary arteries that have been narrowed by PAH, the heart must work harder. Over time, the heart loses its ability to pump as much blood as the body needs which weakens the heart or can lead to heart failure. The right side of Robbie's heart has weakened due to being overworked so he is being treated with Sildenafil, a vasodilator and Diamox a diuretic. Robbie had his hernia repair surgery at 4 days old on February 24th. They had to use a gore-tex patch to close the hole because it was too large to close with sutures. They thought Robbie's left diaphragm was paralyzed but after doing an ultrasound last week they discovered that his left diaphragm is non-existent due to the defect being so large. All he has is the patch which has allowed him to develop a Hiatal Hernia (a small portion of his stomach has crept above the patch and into his chest). At this time we are battling Oral Aversion. This is our sons fight against CDH and PAH. Thank you for visiting. We love you all! God Bless!