About Bennett

If you're new to the blog, you may not know the whole back story of how we got to where we are now. Here's a quick read to catch you up.

Two days before Bennett was to be induced at 38 weeks, I became seriously concerned that my baby had stopped moving in the womb.  Fearing a stillborn, I went to the hospital to be evaluated.  We learned the baby still had a heartbeat.  Although the OBGYN on call also became concerned that the baby might be in distress, as the baby was not moving very much, no one was all that concerned.  It wasn't until Bennett's birth that we realized just how sick our little boy was.

Bennett was born at 3:10pm on September 30, 2009.  He did not cry when he was born.  In fact, he was very sick and struggled to breath.  At one minute, Bennett's APGAR score was 1.  Having thought that things were ok with our baby since he showed to have a healthy heartbeat, Brian and I did not know anything was wrong, even after he was born until the moment when the doctor told Brian to turn off the video camera (who was videotaping right after Bennett's birth). 

It turns out that, while we did not know, the doctor knew that Bennett was very ill.  Brian was not allowed to cut the cord.  I was not allowed to hold him.  Bennett was rushed to the NICU.

Within 12 hours of Bennett's birth, Bennett was sent straight in to surgery.  It turns out that, at some point in the womb (the doctors think less than 4 weeks before his birth), Bennett's colon perforated.  Bennett's meconium (the name for a baby's first poop) was so thick that it actually ruptured Bennett's intestines causing meconium to fill his abdomen. Within hours of his birth,  he was diagnosed with meconium peritonitis.

Unfortunately, the surgeons were unable to fully extract the meconium from Bennett's colon, specifically his ileus.  Therefore, part of Bennett's colon was removed and attached to the outside of his body for several months, to allow for the surgeons to continue to irrigate his intestines.  The hope was that Bennett's colon would eventually work correctly.  At that point, Bennett was then diagnosed with meconium ileus

Meconium ileus is often associated with Cystic Fibrosis.  So, the doctors requested a genetic test to confirm that Bennett was suffering from this disease.  The genetic test came back on 10/6/09.  At one week old, Bennett was diagnosed with Cystic Fibrosis.

(We later learned that 10% of CF patients have meconium ileus - and of those, only 10% of CF patients deal with meconium peritonitis.  Therefore, Bennett is in the 1% of CF patients with his condition.)

After 38 days, Bennett was discharged from the NICU.  He came home for four days before he was re-admitted to the hospital for "failure to thrive."

Bennett was in the hospital again for two weeks where he began to better tolerate his feedings.  Bennett was put on Elecare formula.  In December 2009, Bennett was re-admitted once again to have reanastomosis surgery to put his intestines back together.

In December 2011 and again in January 2015, Bennett underwent surgery to repair issues with rectal prolapse, a common complication with Cystic Fibrosis.

At five years old, Bennett's continued complaint of headaches led us to give him a CT scan where it became clear he needed sinus surgery to clean out all of the thick dried mucus in his sinuses (a common problem with CF).  He had surgery in July 2015.

At six years old, Bennett went in for his fourth rectal prolapse surgery for a more definitive solution to rectal prolapse.  Unfortunately, this surgery led to an intestinal stricture.  In order to provide relief, Bennett underwent multiple dilations.

When dilations didn't provide improvement, at seven years old, Bennett had the intestinal stricture surgically removed. Bennett was unexpectedly given a colostomy during this surgery.  Nine weeks later, Bennett's colostomy was reversed.

The blessing so far is that Bennett has yet to have any real serious issues with his lungs.  Lung damage is the primary reason for death in most CF patients.  

Bennett is currently being followed by the CF Clinic at Children's Medical Center in Dallas, Texas. 

While Bennett has had a very rough start to his life, Bennett's early diagnosis has allowed for his treatment to begin almost immediately from birth.  This gives us the confidence that Bennett has a good chance for treatment of this life-threatening progressive lung disease.

Follow us as God does big things in Bennett's life...