On February 25th we got the shock of our lives when we learned that not only was Debbie in preterm labor, but the baby that she was carrying had a birth defect called Congenital Diaphragmatic Hernia (CDH). We were heartbroken and scared beyond belief. We had never heard of CDH. We had so many questions– What is it? Will our baby survive?
CDH is when the baby’s diaphragm fails to properly form (around weeks 7-8 of gestation). The opening that remains allows the abdominal organs to migrate into the upper chest cavity. This crowds the space that is needed for the lungs to grow. The severity of the baby’s CDH, along with ling function determines the prognosis, meaning you don’t know until they are born. Many babies born with CDH require a highly invasive life saving treatment known as Extracorporeal Membrane Oxygenation (ECMO). This is a heart and lung bypass machine that allows the infant to rest while having his/her lungs begin to recover.
The tricky part for us was that not only did the baby have a severe right-sided CDH, but at the time of our diagnosis, she was too small to put on ECMO after birth. This combination did not allow for much hope. The only way for the baby to survive was for Debbie to carry as close to full term as possible.
Our son Dusty, who was only 22 months old at the time, came every day to visit his mommy.