Team JoJo: January 2015

Friday, January 9, 2015

Update

On Monday, January 5, I made a decision that was very hard for me to make. I decided to put team JoJo on hold. I have been feeling very overwhelmed and frazzled with trying to figure how to get the word out about it, finding families to help and how/what to do for them. To me my family will always come first, and I saw that I was neglecting them. Not just with team jojo stuff but also with many other things. So with the new year upon us I'm making changes! Once I feel that my number 1's are well taken care of, I will start looking back into ways to help CDH families once again. Thank you to all our supporters, without you nothing we have done would have been possible.

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.