Congenital Diaphragmatic Hernia (CDH) occurs when the diaphragm fails to fully form, allowing abdominal organs into the chest cavity and preventing lung growth. CDH occurs in 1 of every 2500 births; somewhere in the world, a baby is born with CDH every 10 minutes. 50% of babies diagnosed with CDH do not survive. The cause is not known.

My wife and I had been married for just over four years when we discovered we were expecting our first child. At our 20 week appointment we had our ultrasound. Imagine our surprise when the doctor said there might be a problem and we needed to see a specialist. The specialist confirmed our first baby, Evie, had CDH. We had a whirlwind of appointments with neonatologists, cardiologists, and surgeons. We were told Evie’s chances of survival were 50/50, but no parent expects anything bad to happen. Evie was born June 14, 2007 at 3:44 p.m. weighing 5 lbs 15 oz and measuring 19.5 inches. Immediately after delivery Evie was passed through a small window into the Newborn Intensive Care Unit (NICU). I briefly saw her, eyes wide open, little mouth moving. Evie was stabilized and prepped for transport to the adjacent children’s hospital for primary care. After what seemed like an eternity, the nurses called and said we could visit. Evie was hooked up to several machines, had IV’s in what seemed like any part of open skin, and was badly swollen from the medications and fluids being administered. I distinctly remember being told Evie was “very sick, very critical”. We were told Evie had stumbled a little bit, but was still doing well. We were encouraged to get some rest and the nurses would let us know of any changes. At about 3 a.m. the phone rang. Half asleep I answered and to my horror it was the NICU nurse telling us to come quickly, Evie was not doing well. We talked to the attending physician and he explained Evie could simply not sustain life on her own. At this point we were faced with two options. Leave Evie on machines with no chance of survival or let her go. I felt horrible, but knew I would never forgive myself if I left Evie on machines for my own selfish desires. I decided to take Evie off of life support. My wife and I frantically called as many family members as we could and told them to come to the hospital immediately. I waited while Evie was taken off all of the machines keeping her alive. I then carried my little girl to the waiting room for final goodbyes. Our little Evie died 6:30 a.m. on June 15, 2007, my wife and I’s 5th wedding anniversary. Evie was laid to rest June 20, 2007.

A little over a year later, we received GREAT news. We were pregnant again! Because we were still considered high risk, we had our prenatal care through a specialist. We started having ultrasounds at 16 weeks to look for any potential problems. During the week 18 ultrasound, the unthinkable happened. This baby, another girl (Allyson Belle) also had CDH. This was absolutely unbelievable news. We had been told CDH doesn’t happen a second time! This started an extreme roller coaster of emotions. How could we possibly go through this experience again?! We decided to continue with the pregnancy with hopes we would have a better outcome. One night my wife started having contractions that wouldn’t go away. She went to the ER for tests. The results came back; her water had ruptured, not broken. This meant she would have to remain in the hospital until Ally was delivered. This happened Wednesday, February 25, 2009; Ally wasn’t due until April 14. Early Friday morning my wife started having severe contractions and was taken to Labor & Delivery. The contractions became more severe and while the nurse was in the room, the water broke and out popped Ally’s head! The nurse started yelling for the doctor and she came running in to take over the delivery. Ally was delivered after only 20 minutes of labor (and no epidural) on February 27, 2009 at 9:07 a.m. weighing 4 lbs 8 oz, measuring 17.5 inches and being 6 ½ weeks early. It was much the same as before. Ally was born and quickly passed through the window to the NICU. We waited until we were able to visit. Ally was doing much better than Evie and had surgery to repair her diaphragm on March 2, 2009. Allyson spent 3 ½ months in the NICU and during that time had a second surgery to repair her diaphragm. Finally we brought Allyson home June 13, 2009.

In February 2010 it was discovered Ally needed another surgery to repair another tear in her diaphragm. There were complications with that surgery and Ally almost died. She spent another month in the hospital, but made it through and came home again. Then on June 8, 2010 I got the worst phone call I have ever received. Allyson was found in her crib, not breathing and was in an ambulance on the way to the hospital. Allyson was taken by helicopter to the children’s hospital. We met with the doctors and there was some concern Allyson had suffered brain damage. The neurosurgeons came and confirmed there appeared to be no cognitive function. We waited 72 hours to see if there was some miraculous change, as had happened so many times before, but this time Heavenly Father felt it necessary to take Allyson home. On June 11, 2010, for the second time in my life I had my child removed from life support. Ally passed away peacefully surrounded by family on June 11, 2010 at 3:20 p.m. Allyson was laid to rest Wednesday June 16, 2010 next to her sister and almost exactly three years after.

To remember our daughters and support other families who have battled or will battle CDH we are participating in several events for charity. For more information please visit: www.cdhawarenessday.org