Ethan’s CDH Journey

by: Trisha Glahn

My beautiful son was hooked up to so many machines, oxygen, and had warming lights on him.  I felt disconnected from him and was worried that I would never get to know him. 

My name is Trisha Glahn. At a routine doctor's visit during my 28th week of pregnancy, my doctor was concerned that something was not right.  My amniotic fluid level was very high and he decided to send me for an ultrasound to make sure everything was alright with the baby.  After the ultrasound, my husband and I were told that our son had a Congenital Diaphragmatic Hernia or CDH. A CDH is a birth defect that happens in utero, where the infants diaphragm does not close completely, allowing the abdominal organs to move up into the chest through the hole.  Following my doctor's evaluation,  I went through a battery of tests at Cincinnati Children's Hospital Medical Center in Cincinnati, OH, to determine the severity of my unborn child's medical condition.  Through a fetal MRI we learned that our son's CDH was "a favorable prognosis".  His bowels, intestines, and kidney had shifted up into his chest, causing his heart to shift to the right side of his small chest.  Because of all of the organs and pressure in his chest, this made his lungs smaller than they should be and his left lung stopped growing and maturing as it should have been.  I was put on a strict routine of non-stress tests and monitoring for the next few weeks, until I was ready to deliver my son.

Our son, Ethan Colby Glahn, was born on April 22, 2008, as a result of an emergency c-section.  As I lay recovering in the hospital, Ethan was rushed by a team of doctors to Children's Hospital.  At this point, the only thing we had heard was that Ethan had to be resuscitated and was stable enough for transport.  Two days later, I was allowed to see my son for the very first time. You see, after Ethan was born he was taken from me within seconds and rushed out of the room.  I had only seen him through 2 Polaroid pictures the staff at the hospital had taken.   

As we arrived by his bedside for the first time, my heart sank.  My beautiful son was hooked up to so many machines, oxygen, and had warming lights on him.  I felt disconnected from him and was worried that I would never get to know him.  Days passed while Ethan stabilized even more and was finally ready for his life-saving surgery.  At only 10 days old, Ethan had his repair surgery.  The surgeons made a six inch incision in his abdomen and very carefully pulled his intestines, bowels, and kidney down into the correct area.  They were able to use Ethan's own tissue to close the hole in his diaphragm. 

The next obstacle to overcome was learning to breathe on his own.  Ethan had been on a ventilator since a few seconds after he was born.  After weaning him down little by little off of the oxygen, Ethan was extubated at 17 days old.  We were finally able to hear our baby cry for the very first time!  Ethan did fantastic breathing room air and after two days of having nasal cannulas he was completely free of the breathing tubes. 

The most complex part of Ethan's recovery at this point was learning how to eat.  At this point, he was still being fed formula through a tube placed past his stomach to make sure he was gaining weight and getting all of the nutrients he needed to survive.  Another issue CDH babies have is reflux issues.  Most CDH babies have difficulty learning to drink from a bottle and keeping it down.  Because their insides have been so jumbled up, it makes it harder to digest formula and breast-milk. 

As Ethan grew stronger and got bigger, he was having no issues with breathing, no heart problems, no kidney problems, and his only difficulty was feeding.  On May 30, 2008, after 37 days in the hospital, he was able to go home with us!  Ethan was coming home with his feeding tube, which we had to learn to put in and take out, some multivitamins, and Prevacid to help control his acid reflux.  It didn't matter what our baby came home with, we were just ecstatic to have him home.  This was the happiest moment I had experienced!!  We were finally able to bring our little boy home!  Ethan only had his feeding tube for about 2 weeks and then he really did well with his bottle feeding.

Today, Ethan is a very happy, healthy, and smart 14 month old.  He has been making all of his developmental milestones and is on the verge of walking any day now.  He has proven to be the strong fighter we knew he was from day one.  Ethan has defeated the CDH monster!

Please feel free to visit Ethan's website at http://www.caringbridge.org/visit/EthanGlahn.