(Image of Liam at around 2 weeks old 2011)
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.
(Picture found on a google search listing Nayeli Faith Foundation (CDH organization that helps families affected with CDH))
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.
(Liam on ECMO 2011)
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-hernia ting but it’s slimmer than with the patch. After getting extubation, Liam was on CPAP.
(Liam on CPAP 2011)
They start with the pressure setting on high and slowly wean down. The first time they extubation 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-intubated. After two days they extubation him again. For Liam the magic number was 6 when 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 cannula.
(Liam on oxygen via low flow nasal cannula at 4 months old 2011)
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 kicked CDH booty.
(Image is Liam at 4 years old getting his blood pressure check at the GI office 2015)
Because of CDH Liam's lungs were compromised and weak. His immune system was weakend and he had a harder time fighting of illness. He was usually the first to get sick and would stay sick much longer than anyone else. For his first 3 years of life, a common cold send him to the hospital and on oxygen. Liam's would randomly require oxygen because of his Chronic Lung Disease and sleep apnea.
(Liam on oxygen fast asleep. 4 years old 2015)
Liam's GI issues were something we always had problems with. Every time we thought we had it dialed in, he would stop tolerating again. When I took him to the GI back in November, they said that in the last year he hadn't gained a pound. Sure he gained the pound but he always lost it. On paper he stayed the same weight for the entire year of 2015. We were just adding new mixes to his feeding regimen but they didn't have time to work.
(Liam holding his NICU picture showing how far he's come. 2015)
On December 15th, 2015 at the age of 4 years 5 months and 1 day, our sweet little lamb went to Heaven due to a pulmonary embolism. It was sudden. He'd caught a cold two weeks prior, got well, then suddenly sick again on the 13th. The doctors believe that the virus he caught, caused an infection in his blood because his immune system couldn't fight it off. This infection caused the pulmonary embolism that called him home to be with Jesus.
We miss our sweet boy everyday and think of him always.
