Team JoJo: What we've done so far

Wednesday, May 21, 2014

What we've done so far

I decided I wanted to be available to families who are faced with this journey. When we were given the CDH diagnoses the research I did only brought me to one story of a survivor who spent six weeks in the hospital. My thought was that's not bad we can do that. Little did we know that our beginning would be six months instead of six weeks. We are now almost 4 years into our journey and Jo is doing really great. I'm not sure yet what the future holds for team JoJo but for now I try to reach the families that are delivering their CDHer in lubbock. I've been blessed to be able to reach out to 3 families already:) Here are some pictures of packages I have sent to them:

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About Congenital Diaphragmatic Hernia (CDH)

There are 3 types of congenital diaphragmatic hernias: Bochdalek hernia, Morgagni hernia, and bilateral diaphragmatic hernia. The Bochdalek hernia or left-sided is the most common, occurring in approximately 85% of cases. Left-sided hernias allow the small and large bowel and intra-abdominal solid organs to herniate into the thoracic cavity. In Morgagni or right-sided hernias, only the liver and a portion of the large bowel tend to herniate.Bilateral hernias are uncommon and usually fatal. Statistically, a congenital diaphragmatic hernia birth defect occurs in every 1 in 2,500 live births in the United States and accounts for 8% of all major congenital anomalies. This figure translates to approximately 1,800 live babies born with the congenital diaphragmatic hernia birth defect every year. In comparison, cystic fibrosis occurs in every 1 in 3,000 live births in the United States, and spina bifida has an occurrence of every 1 in 1,478 live births. Congenital diaphragmatic hernias occur just as often as cystic fibrosis and spina bifida, but congenital diaphragmatic hernias often have fatal results. Each child who has congenital diaphragmatic hernia is different, no two children respond to treatment the same way. Nobody can accurately predict the outcome.Pulmonary Hypertension is the primary issue these infants face. Their lungs are not “normal” and did not develop as they should because of this defect. Many medical centers that treat CDH infants in numbers over 15+ per year now have a better understanding, experience and more therapies to give these babies a better overall chance of survival than years previously. There is no good time to have a baby with congenital diaphragmatic hernia but today, with the knowledge and experience of some hospitals out there, it is the best time to have a CDH baby.