Congenital Diaphragmatic Hernia (CDH) is a condition that affects 1 in 2500 to 4000 babies per year. It is where the diaphragm has not developed properly or has torn - potentially allowing the guts (well, some of them) into the chest cavity.
The hole in the diaphragm whilst the cause of the problem is not the issue. CDH principally leads to under-development of the lungs - pulmonary hypoplasia. Whilst in the womb, the lack of lungs isn't really a problem as all nutrients, oxygen etc. are provided for through the umbilical cord. Once outside, the lack of lungs quickly becomes a problem and depending on how badly affected the baby has been, the lungs may not be able to support life. The hole can start as early as 8 weeks and CDH may also be indicative of other congenital problems. The hole can be sufficiently small so as to escape detection until birth or so massive that there is essentially no diaphragm. It is not necessarily the case that the smaller the hole the better the prognosis; outcome is more dependent on the amount of abdominal contents in the chest cavity. It should also be stated that poor prognosis sometimes do well and good prognosis do badly.
On the basis that the lungs are sufficiently able to support life, then once the baby has stabilised and is strong enough, the diapragm is repaired or replaced. After which, it's pretty much all systems go. Yes, there are additional complications with a CDH baby (problems of feeding, reflux, bizarrely their hearing is a bit screwed too), but that's it. The baby should develop normally - albeit slowly due to the limited lung function, and he'll have amazing scars. Ok so they're never going to be the next Mark Cavendish, but there's no reason why they couldn't be the next Steve McClure.
More details can be found here, This link will take you to the site of an EU trial that aims to determine whether FETO (a balloon inserted in-utero into the trachea which is what we have done) increases the survival rate. A small study in South America shows that the likelihood of survival jumps from below 10% to about 50% with FETO in cases of severe pulmonary-hypoplasia (that'll be us then).
There are numerous baby charities, the CDH one can be found here and they also have a public facebook page
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