During a routine ultrasound at 20 weeks, Kelly and David Hubble learned their baby had a birth defect called Congenital Diaphragmatic Hernia (CDH). More common than spina bifida, muscular dystrophy and cystic fibrosis, CDH remains a mysterious disease with no known cure.
CDH occurs when the diaphragm does not fully form and allows abdominal organs to enter the chest cavity. This can prevent the lungs from growing normally.
"It was completely overwhelming," says Kelly Hubble. "I didn't know how I'd get to a point where I'd smile or laugh again because I was so depressed when I got here."
Expert Care for CDH at the Fetal Care Center
Immediately after the ultrasound, the medical team with the Fetal Care Center began closely monitoring the baby's development with fetal MRIs, ultrasounds and echocardiograms. They began planning for a safe delivery at Barnes-Jewish Hospital, and preparing for the baby's medical and surgical needs once he arrived. The Hubbles prepared for a long stay in the newborn intensive care unit.
"It was vital that we knew of the diagnosis ahead of time. Had we not delivered at Barnes-Jewish where they were fully prepared for his birth and could get us to Children's Hospital so quickly, I don't think we'd be sitting here right now."
By the time baby Benjamin arrived at 39 weeks — by a controlled induction — his doctors were prepared to address his unique challenges. Kelly and David had met with the medical team to learn about Benjamin's illness. They had also already toured the NICU.
Recovering in the NICU
Even with the benefit of advanced preparation, the Hubbles faced a long journey.
"It was a roller coaster of emotion. At first we had a honeymoon period, then it got very bad. He had to go on a heart and lung machine for many days," explains Kelly. "We did a lot of crying and soul searching."
"It was pretty emotional, but we got through it together and the staff made the stay easier," says David Hubble. "The day that he was finally not the sickest kid in the NICU, that was a pretty good day."
Benjamin spent the first four months of his life in the NICU. In that time, he spent three weeks on a heart-lung bypass machine and had seven surgeries.
Baby Benjamin: Healthy, Happy Boy
Today, at home in Millstadt, Illinois with his mom, dad and two big sisters, he is a healthy, happy six-month-old.
"Statistically he shouldn't be here several times. They did an amazing job taking care of him in the best possible way," says Kelly. "He's our miracle."
For more information, contact The Fetal Care Center at 866.867.3627.