Maurice & Xavier
Age: 11 & 8
Maurice and Xavier were born with congenital diaphragmatic hernia, a condition that occurs when the diaphragm doesn’t form properly in utero, resulting in an opening in the muscle that separates vital organs in the chest, like the heart and lungs, from other vital organs in the abdomen, like the intestine and stomach.
Maurice was undiagnosed until he was 18 months old, when his pediatrician noticed he was breathing atypically. Since this was out of the blue, Maurice's parents were panicked and confused. When his pediatrician said there was a bed ready for him at Rady Children’s the tension started to ease. Maurice went straight to the Rady Children’s Acute Care Pavillion for observation before surgery. In the days leading up to surgery, his parents had so many questions and concerns and the Rady Children’s team took their time to answer each one and explain everything. Since the surgery would occur at such a critical time in Maurice’s development, the doctors warned that he may need to relearn to talk, walk and eat. Due to the great care he received, Maurice ended up walking, eating and talking just fine! During his recovery he stayed in the PICU and then was moved to the step-down unit where he was visited by a therapy dog, wheeled around in a wagon and even visited a playroom with toys – all resources funded by philanthropic donations.
After Maurice’s hernia was discovered, the family went through genetic testing at Rady Children's to see if there might be other medical hurdles for Maurice to overcome. The genetic testing confirmed that Maurice does not have other medical needs, and it was likely that any siblings would be spared a CDH diagnosis. Then came Xavier!
Five years after they welcomed Maurice, Cindy and Maurice III were preparing for Xavi to be born. While at their 20-week ultrasound, doctors found a hole in Xavi’s diaphragm – another congenital diaphragmatic hernia diagnosis. Since the hernia developed much earlier for Xavi, his case was more severe, and he had a lot more complications than Maurice. From the day he was born until he was seven months old, Xavi was in and out of the Rady Children’s NICU or PICU. He required multiple operations to address the hernia and had difficulty eating.
Xavi’s first surgery was a hernia repair, just three days after he was born. At that time, his care team discovered that Xavi had ectopic pancreatic tissue – there was a piece of his pancreas growing on his intestine. This led to a second surgery at four months old. Xavi was too weak to eat orally and developed an oral aversion since he would struggle to breathe if he had to eat. He underwent more surgeries to address his difficulty eating – a g-tube placement surgery and a fundoplication. A few months later, Xavi re-herniated and needed another surgery to repair that herniation.
In addition to multiple surgeries, Xavi has received physical therapy, occupational therapy, speech therapy and was seen at Rady Children’s feeding clinic. He was closely monitored by the Rady Children’s GI and surgery teams until he was three years old. He also had visits with cardiology and pulmonology.
Both boys were treated by Dr. Fairbanks, who Cindy and Maurice III call their “guiding light,” as he took time to explain things in detail, make them feel comfortable, and affirm the belief that they were in the best place for their children. Maurice and Xavi’s parents credit Dr. Fairbanks and the team at Rady Children’s for empowering them to be the best parents they could be for their sons.
Today, Maurice and Xavi are active and healthy, thanks to the life-saving care received at Rady Children’s. They both love soccer and other activities and are the proud big brothers to their little sister Madeleine!