CDH occurs when the Diaphragm does not develop fully, allowing the abdominal organs to move into the chest cavity. This typically occurs on the Left side of the diaphragm but it may occur on the right side and possibly there could be no diaphragm present at all. Out son's case is a Right Side CDH which represents approximately 2% of all CDH cases. Based on our Ultra-Sounds, MRI and Fetal Echocardiogram we know that Will's case is severe. His Liver has moved into his chest cavity and completely compressed his right lung. His liver has also pushed his heart to the far left of his chest cavity resulting in an extremely small left lung. He will require immediate NICU care at birth and once stable he will have a surgery to repair his diaphragm. In the best case scenario, we will be in the hospital for two or three months following Will's birth. If you would like to learn more about CDH please take a look at the following link: http://www.chop.edu/fetalsurgery/everything_in_place/index.html
Matt and I explored medical care here in Atlanta and were surprised to discover that we would not be able to provide adequate care at Northside and Children's Hospital of Atlanta. CDH babies are the most fragile and in Atlanta I would deliver at Northside and Will would be transported to Egleston. Egleston is the only ECMO center in Atlanta. ECMO is a heart and lung bypass machine that may be needed immediately due to the severity of Will's CDH. Therefore the transport itself is not acceptable. In addition, Egleston does not operate on children who are on ECMO due to the increase bleeding that results.
We have determined that the best care available for William is at Children's hospital of Philadelphia (CHOP). There I am able to deliver Will in a room that is connected to an NICU where ECMO will be prepped in case he requires it immediately at birth. CHOP also offers surgical repair to CDH babies who are unable to be weaned off of the ECMO machine. We hope this is not necessary but would like to have every treatment option available to Will as he fights for his life. There are a few hospitals in the country who specialize in the care of CDH babies and we are fortunate to be able to ensure that our son receives this level of care.
My pregnancy has been the joy of my life. I have never been happier :-) The best news is that while in utero Will has no discomfort because for now I am providing him all the oxygen he needs. There is a possibility that he may come early due to high levels of amniotic fluid resulting from Will's inability to properly regulate his environment. We are planning to be in Philadelphia June 29th just in case. This will also allow the doctor's at CHOP to become more intimate with Will's case prior to his arrival.
Matt and I are really doing great. Please continue to pray for us. Sometimes you hear the saying that God will not give you more that you can handle. That could not be more untrue. It is much better stated that God will not give you anything you cannot handle with His strength. We have faith that this is part of God's plan for our life. We are fully leaning on Him for strength and guidance to make the best decisions for Will's care. We feel His presence in our lives more today than ever and we are continually thankful for the support and love He is sending our way through our friends, family and medial professionals.
We will do our best to keep this Blog up to date so that everyone can join us in the battle for Baby Will's life.