About Cliff

We welcomed Cliff into this world in spring of 2012.  Like all newborns, he was adorable.  But we noticed early on that Cliff seemed to be suffering from a stubborn case of jaundice.  Unfortunately, it turned out to be a symptom of something far more serious.

After two weeks of severe jaundice our pediatrician sent Cliff to the hospital, where a parade of doctors and various –ologists came in to check on our little guy.  One hospital visit followed another and, over time, we began meeting with a whole host of specialists.  The conclusion, confirmed by genetic testing, is that Cliff has a variant of Alagille Syndrome that has only been seen once before.

For Cliff, Alagille Syndrome means health complications.  Cliff’s liver is not able to route the majority of the bile produced there to his intestines to digest food and his kidneys are unable to filter out enough acid from his blood.  Cliff also has a condition called pulmonary stenosis where the arteries leading from his heart to his lungs are too small which results in his heart having to work harder in order to do its job.  Cliff takes multiple medications each day to assist with many of these problems.  In addition, Cliff struggles to gain weight which is a problem for many children with Alagille Syndrome.  His doctors have put Cliff on a specialized formula and given him a nasogastric feeding tube for night feedings.

All this has kicked off what has become our new normal.  Cliff heads into Phoenix Children’s Hospital, among other places, on a regular basis to check-up with his doctors, including his hepatologist/gastroenterologist, nephrologist, cardiologist, nutritionist, and pediatrician.  We are very grateful for such a talented and helpful group of doctors who have been gracious in their help and explanations as we’ve gone through this experience with our little boy.

At this moment the future is still unclear.  There are some benchmarks that Cliff is doing great on and there are some that are more worrisome.  We enjoy each and every moment we have with our little guy and hope that we continue to have him here in our lives.  But in the meantime, we do our best to take care of him and put the rest into the loving hands of our caring Father in Heaven.