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Robby Dumford was born with a life-threatening condition called congenital diaphragmatic hernia (CDH). Because of his fighting spirit and the comprehensive CDH care at Cincinnati Children’s, Robby survived. But he still faces huge challenges, and his care team will be with him every step of the way.
Lee and Barbie Dumford remember being so excited when they found out they were having a baby boy. But that joy was short-lived.
The ultrasound that revealed the gender of their unborn infant also unveiled their son's life-threatening condition: congenital diaphragmatic hernia (CDH).
CDH is a rare condition in which the diaphragm does not develop properly and the abdominal organs float up into the chest cavity. The crowded chest cavity doesn't allow room for the lungs to fully develop, leaving Robby and children like him unable to breathe on their own. “We were scared,” Barbie recalls. “We didn’t know anything about CDH except that it was very serious and he could die.”
The Dumfords were referred to Cincinnati Children's, home to the Perinatal Institute – a new model for collaboration that brings scientists and clinicians together to solve some of the most complex problems for infants – and a multidisciplinary team of experts in the treatment of CDH. “We were willing to relocate if necessary to get Robby the best care,” Barbie says. “What we discovered was that there is a CDH team right here at Cincinnati Children’s and that they treat more children with CDH here than anywhere.” The CDH team includes specialists from many areas, such as neonatology, surgery and cardiology who are involved with patients from the time of admission until they are healthy enough to go home – and even after that.
“Our dedicated team really improves outcomes for the children,” says Beth Haberman, MD, medical director for the Newborn Intensive Care Unit (NICU) and the High-Risk Infant Follow-Up Program, and Robby’s primary physician at Cincinnati Children’s. “We get to know each child and their family and we gain a deep understanding for the medical challenges our patients face.”
From the very first meeting with the CDH team, the Dumfords knew that Cincinnati Children’s was where they wanted to be. “All of the doctors and nurses went way above and beyond for us from day one. If we had 100 hospitals close to us, we’d pass them all up to come here,” Lee says.
Robby Dumford will continue to visit the High-Risk Infant Follow-Up Program at Cincinnati Children's to monitor his growth, development and feeding issues.
The Dumfords' initial contact with Cincinnati Children’s was at the Cincinnati Fetal Center, which provides state-of-the-art care for at-risk unborn babies and their mothers. The nationally renowned team monitored Barbie’s condition and ran a series of tests to determine the complexity of Robby’s CDH. Unfortunately, the results were not what they had hoped for. Robby's condition was severe. Tests revealed that his stomach, spleen, small and large intestines, bowel, colon and liver were in his chest cavity and his lungs had not developed. Due to the severity of Robby’s condition, his birth took place at the Fetal Center where he was placed on a heart/ lung machine specially designed for tiny infants. Typically, doctors prefer to give the babies some time to grow and gain strength before doing surgery. Because Robby’s lungs were not functioning and had no room to grow, his parents agreed that immediate surgery was the best option. On his first full day of life - October 8, 2009 - Robby had surgery to move his organs down and fix his diaphragm. “When the doctor came out to talk to us after the surgery, he had a grin from ear-to-ear. We knew it couldn’t be bad news,” Lee says. And they were right. Robby had not only come through surgery well, the surgeons discovered a functioning right lung which had been hidden behind his displaced stomach.
Robby’s care was then transitioned to the Perinatal Institute Newborn Intensive Care Unit (NICU). As a level IV NICU, Cincinnati Children's cares for the sickest babies and is a national referral center for fragile infants. Robby spent the next 55 days in the NICU. “It was hard to see him lay there and not be able to pick him up and hold him, but I did get to touch his little hand and talk to him,” Barbie recalls. “I remember he use to hold onto my finger and squeeze it like he wanted me to know he could hear me.”
Nearly eight weeks after birth, Robby went home for the first time. But his relationship with his CDH team is ongoing. He still faces challenges typical of CDH patients, including acid reflux – a big issue for these kids – a higher susceptibility to heart and lung problems and developmental delays. Because of these long-term issues, Robby will continue to visit the High-Risk Infant Follow-Up Program regularly. The follow-up program is a unique and essential source of comprehensive, ongoing services to high-risk infants in Greater Cincinnati. Yet, it is a service not found at many pediatric hospitals because many of its services aren’t well reimbursed through insurance. Cincinnati Children’s is dedicated to the program because it helps keep children thriving at home - where they belong. Like Robby, most of the children who receive care in the follow-up program are former patients of the NICU. Others come from one of the three neonatal intensive care units throughout Cincinnati, all of which are staffed by Cincinnati Children's physicians. These children have ongoing health care needs that are often too complex to be met by the general pediatric community. “The High-Risk Infant Follow-Up Program was established in 1976 to care for low birth weight infants and evaluate their long-term outcome. Since then it has expanded to caring for all infants in the Greater Cincinnati area with complex medical needs,” Dr. Haberman explains. “Without the program, babies would stay in the hospital longer because no one would feel comfortable taking care of these kids.”
The program serves as more than a place to seek medical care. It is where our community’s most vulnerable families can find support and guidance that helps them learn to care for their child, relieve the stress and worry that comes with having a high-risk baby, and become self sufficient. In Robby’s case, support from the High-Risk Infant Follow-Up Program team enabled his parents to provide oxygen to him at home and care for his feeding tube for nourishment. The program staff will continue to monitor his progress through coordinated visits with Dr. Haberman, his surgeon and his cardiologist.
Robby's parents know there will be challenges ahead that they didn’t have to think about with their other children: Madison and Haley. But they have hope for a healthy future, in equal part to the care they received at Cincinnati Children’s and Robby’s optimistic nature. “Robby is a miracle baby and Cincinnati Children’s is a miracle hospital,” Barbie says.
Three weeks after his birth, Robby is held by his mother for the first time. Robby spent 55 days in the Perinatal Institute NICU at Cincinnati Children's.
Robby Dumford will continue to visit the High-Risk Infant Follow-Up Program at Cincinnati Children's to monitor his growth, development and feeding issues. L-R: Barbie and Lee Dumford, Beth Haberman, MD, Robby Dumford.
If you have an experience with Cincinnati Children's, we invite you to share your story.
Today, Robby is doing great and weighs in at a whopping 19 pounds.
While in the Neonatal Intensive Care Unit (NICU), your child will have a primary team of nurses, respiratory therapists and doctors.
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