Why CHERUBS?

In April 2003 our world was turned upside down when, at our 19 week ultrasound, our son was diagnosed with Congenital Diaphragmatic Hernia (CDH).  We were told the odds, that 50% of babies born with CDH do not survive.  Our doctor suggested terminating the pregnancy, but to us, that was not an option.

We had more doctor appointments and ultrasounds than a "regular" pregnancy.  We met with the Chief of Staff for the NICU at Children's Minneapolis to discuss the birth plan and take a tour of the NICU.  At that time he gave us information about CHERUBS and suggested we read the information they had posted.  We did just that.  We're not afraid to admit that we were scared at what we read.

In August 2003 our son was born with a left CDH.  He had a repair five days later.  It was determined that he was missing all but the rim of his left diaphragm.  All of his abdominal organs, including the liver, were in his chest.  We were told to prepare for the worst, but we only expected the best.  We believe that everything happens for a reason and there was a reason all of this was taking place.  We might not ever find out that reason, but we knew there was one.

Our son spent the first 161 days of his life at Children's Minneapolis.  He had a total of 11 surgeries while in the hospital.  He came home with a trach, vent dependent, an apnea monitor and a feeding tube.  We had to learn to live with a nurse in our house 16-24 hours a day.  Our six year old daughter said she didn't realize babies had so much equipment.

Just short of his second birthday, our son was decannulated (trach removed).  His feeding tube came out a year later.

At my son's six year check up, his pulmonologist and I talked about our journey with CDH.   The doctor had already used our son as an example in a presentation for a doctor's conference.  He also wanted to use him in a CDH/heart study he was doing with a cardiologist.  Then he asked me what I was doing with what I had learned.  We talked about CHERUBS.  That great resource we had heard about during our pregnancy.

I was already a fan of CHERUBS on Facebook.  So I checked it out a little more.  Dawn had made a posting that they were looking for volunteers.  Being a person who had a hard time saying no, I volunteered to raise awareness.  Shortly after that I volunteered to be the Minnesota state representative.

CHERUBS is a great resource.  Whatever you are looking for, the information is there.  And it is a great way to make friends.  I'll do what I can to support CHERUBS and make others aware of CDH.