National Congenital Diaphragmatic Hernia Day

I had my son Colin on April 2nd 2009 via cesarean section. When he was born, he was diagnosed with Congenital Diaphragmatic Hernia (CDH). This is where there was a hole in his diaphragm and his intestines went up into his chest cavity causing his right lung not to develop fully.

When he was born, he could not breath on his own. He was immediately intubated and put on respirators. They had to use a “paralyzing” drug to keep him asleep while he was intubeated. Within hours he was taken by AMR code 3 to UCSF in San Francisco. There, 4 days after his arrival he had surgery to get everything in his body back in place. In his 3 week stay at UCSF, after surgery he was slowly able to wake up of the paralyzing drug and eventually was able to get his breathing tube out.

He was then put on something called a CPAP machine which basically looks like a snorkel. This machine gives them the opportunity for them to breath on their own but at the same time gives the lungs little spurts of pressure to assist them. Within days he was able to get put on a high flow nasal cannula.

On day 20 at UCSF, the doctors felt comfortable for Colin to be transferred back to Kaiser in Walnut Creek. Colin spend 3 weeks at Kaiser, and he re herniated. He wasn't holding any of his food down, so they took an x-ray and saw the re herniation. Luckily the re herniation did not affect his breathing in any way so he was able to stay on the regular nasal cannula. He was send back to UCSF to have another surgery. His stay at UCSF is unknown at this point. As soon as he starts to recover, he can start working on eating again. CDH is more common than serious conditions such as spina bifida, yet less is known about it.

Not many people know about CDH. I am actively working on trying to spread awareness so that people can understand more about this horrible defect and hopefully there will come a day when we can start conducting more research about CDH and find out what causes it so we can potentially stop it from happening. My purpose for this letter is this. I am working with a cooperation called Breath of Hope Inc. It is a website that a lady named Elizabeth Doyle started a few years back. She lost her son to CDH about 10 years ago, and ever since she has been working on getting a National Congenital Diaphragmatic Hernia day started. She has already gotten a number of states to legally make this a day for awareness for CDH.

We would like to make March 31st every year National Congenital Diaphragmatic Hernia day. I would like to ask for your signature so we can get the state of California to consider this. We will do whatever it takes and how ever long it takes to make this day happen. The reason I am so passionate about making this happen is because I watched a baby lose his life to CDH while I was at UCSF with my own. They are given a 50% chance of survival when diagnosed with CDH. Research is so greatly needed for this defect so detection can be made more effectively, and that hopefully one day we can solve the problem before the baby is born with no risk to mother or baby.

If there is an environmental factor that causes CDH then we will find out what that is. Please contact me and let me know what steps need to be done to make this a reality. I understand that things such as this can take some time, but I am willing to take however long it takes and whatever steps that need to be taken. I surely hope that I have explained well enough about CDH and how important an awareness day would be for this cause. I hope that you agree.

Thank you very much for your consideration and for taking the time to read this letter.

Sincerely,
Hayley M. Murphy