Daniel was diagnosed with Congenital Diaphragmatic Hernia or CDH during his 20 week scan. When we were first told of this we were unable to discuss this with a consultant for a week as it was Bank Holiday. What we found was there was little information around regarding this condition so we decided to chart his progress for all to see in the hope that another family may benefit from our experiences. What we do know is the following:
- CDH is caused by the diaphragm not closing or forming at around 8 week gestation
- Organs that are normally in the stomach area are able to move freely into the chest cavity causing the lungs and sometimes the heart to be crushed
- There is no know cause to date, it is a developmental issue that “just happens”
- There is nothing that can be done as yet to prevent it
- It occurs in roughly 1 in 2500 babies
- There is no fixed time as to how long you will be in hospital, it ranges from 2 to 10 weeks although some may be more
- There is very little that can be done for all cases however new techniques are developed for certain cases. The procedure that we had is only performed on babies that have a very poor chance of survival, Daniel had a 10% chance of surviving before the procedure. This procedure is known as a Fetoscopic tracheal occlusion
What I must stress to anyone going through this is that, to date, there is no know reason for this and there is nothing that could have been done to prevent this.
Sources http://www.uk-cherubs.org.uk