Liam was born on July 14th 2011 at 10:59 pm. We were expecting a strong, healthy little boy. When Liam was born he wasn’t breathing. After forcing air into him, he let out one small cry. What I thought was the best sound in the world turned out to be the worst. Liam was born with a condition called Congenital Diaphragmatic Hernia, CDH for short. Meaning his diaphragm didn’t develop properly leaving a hole allowing his stomach, intestines and spleen to go up into the chest cavity. Because of this his heart was pushed over squashing his lungs leaving his left lung under developed. Liam’s case was what they consider mild for this type of birth defect. Babies with CDH aren’t supposed to be allowed to breathe and aren’t supposed to be bagged. They are supposed to be paralyzed and antedated until after their repair surgery. Because Liam was undiagnosed they had no idea that anything serious was wrong. Once they realized what Liam had they had to life flight him to UCSF because they were one of the few hospitals that could help him. Thankfully UCSF specializes in cases such as CDH. The staff at UCSF did everything they could to stabilize Liam. When all else failed they put him on ECMO.
ECMO is used as a last chance scenario because the chances of a baby surviving is so slim. Liam was on ECMO for about a week when he finally was well enough to be taken off. A few short days after ECMO, on July 21st Liam under went his repair surgery.
It was the best birthday gift a mother could ever receive. Not only was it my birthday but the news was awesome. Liam was very blessed. He only had part of his stomach, part of his spleen, and some of his intestines in his chest cavity. His left lung wasn’t as under developed as everyone first thought. We were blessed even more when Liam had enough muscle tissue to close up the hernia without the need of a patch. A patch is a synthetic material like rain coat material they use to patch up the hernia is there isn’t enough muscle or tissue to use. The patch does not grow as you grow so around age 5 a patch recipient will most likely have to have another surgery. Liam was very blessed in not needing a patch. He still has a chance of re-herniation but it’s slimmer than with the patch. After getting extubated, Liam was on C-PAP.
They start with the pressure setting on high and slowly wean down. The first time they excavated him, he turned blue within minutes. After being given breathes and searching for the right face mask for him they finally stabilized him. Unfortunately Liam only lasted two days on CPAP before his right lung collapsed and had to be re-antedated. After two days they excavated him again. For Liam the magic number was "six". His right lung, the good lung, would collapse. After the right lung collapsed the second time they found that his right side diaphram was high and they thought it wasn’t allowing his lung to expand properly. They were thinking he would have to have another surgery to tack the right side diaphram lower. They took x-rays and ultrasounds to find that even though the diaphram is high that it was moving properly not interfering with the lung. Just a few days later Liam’s lung was strong enough to breathe without any problems and they were able to remove the CPAP and put him on a high slow nasal canula. After very slowly lowering the nasal canula, Liam was able to be put on a regular nasal canula which he only had for 4 days. Right before his discharge they did a MRI and found that Liam has “white noise” on his brain that could possibly affect his cognitive and fine motor skills. It’s something that they have to keep an eye on. CDH kids have been known to have both progressive hearing and progression vision loss. On top of that ECMO causes both vision and hearing loss. Even though Liam passed both his vision ad hearing test doesn’t mean he won’t develop hearing and vision loss in the future and because he is both a CDH and was on ECMO his chances are even higher. There’s so much we have to watch for with Liam and God only knows the hurdles that are to come. We have to attend CDH clinics and wellness clinics up at UCSF every few months to keep track of his progress as well as see his local pediatrician on a regular basis. Thanks to the doctors and nurses at UCSF my son is a CDH survivor.
Liam had an 8 day stay at UCSF for an NG tube and additional study on his high right side diaphragm from September 29th to October 7th 2011. We were only home for 2 days before he got sick. We took him to the local Emergency room where they didn't do anything but take an xray. The next day, October 11 2011 we took him to Valley Children's Emergency room where we was admitted and currently there.
He has acid reflux and cought a cold. The cold made the acid reflux worse than normal which cause him not to be able to hold down any food. We learned on our current stay that his good lung is actually half the size of his "bad lung" and his stomach is malrotated but his bowels are normal.
Liam will have to have surgery to repair his high right side diaphram but they would like to wait as long as possible before they do. Ultimately they would like him to gain weight. He is failure to thrive and at the age of 3 months still wears newborn clothes.
~ Aubin, Liam's Mommy