Lifesaving Care for Kenza
Kenza is a busy toddler who loves to laugh. She squeals with excitement when her dad comes home from work. Her mom, Soukaina, says Kenza enjoys going for walks to watch birds and meet new people. One place Kenza has a lot of friends? Children’s National Hospital. She and her family have spent a lot of time there, even before her birth.
Fetal cardiologist Mary Donofrio, MD, FAAP, FACC, FASE, first diagnosed Kenza with a complex form of Tetralogy of Fallot at 22 weeks in utero. This congenital condition has four problems, the biggest being a hole in the heart and obstruction to lung blood flow. In addition, Kenza had very small lung arteries that were disconnected from each other and a genetic disorder called DiGeorge syndrome. “There were so many questions in my head when we got her diagnosis,” says Soukaina, “Would she be OK? Had I done something wrong?”
Dr. Donofrio kept a close watch on Kenza throughout the pregnancy. She also helped prepare Soukaina and her husband for the birth, as well as the surgeries and extensive care that Kenza would require once she arrived. Soukaina gave birth at a local hospital and was then transferred to the Neonatal Intensive Care Unit at Children’s National within a day. Kenza stayed for six weeks. “Dr. Donofrio prepared us for everything, including that Kenza might turn blue when she cried,” Soukaina says. “It was terrifying.”
Kenza’s parents often found comfort in the Bunny Mellon Healing Garden, a place to enjoy fresh air at Children’s National. They also appreciated nursing care, especially from certified nurse practitioner Kathleen Reid, CPNP-AC. Kathleen runs the home monitoring programs for infants like Kenza with some of the most complex congenital heart disease cases. Kenza’s family would continue monitoring her oxygen, heart rate and weight for several months until her final surgery. Kathleen also helped them care from multiple subspecialists. “Without her we might have been lost,” Soukaina says. “From the moment we came home and were learning how to do everything, she was there to help us find a solution.”
Kenza was 14 months old when she had her third surgery with Yves d’Udekem, chief of Cardiac Surgery. The procedure completed her heart repair, closed the hole in her heart and put her lung arteries back together.
“We trusted Dr. d'Udekem from the first time we met him,” Soukaina says. “He told me over and over again that he would take care of my daughter and that she would be OK. She was in great hands.”
After her final “big repair,” Kenza could have orthopaedic surgery to repair a club foot. She’s now busy learning to walk and talk. She still visits the hospital for follow-up appointments as well as physical and speech therapies. She has also traveled the world, visiting her grandparents in Morocco twice. When Kenza is older, she’ll need further surgery to change the connection from her heart to her branch lung arteries.
“It was a tough first year for our family,” Soukaina reflects. “But from the first day at Children’s National, staff there helped put us on a path to enjoying our lives. All I can say is thank you to everyone who played a part in her care. They saved my daughter’s life.”
Fetal cardiologist Mary Donofrio, MD, FAAP, FACC, FASE, first diagnosed Kenza with a complex form of Tetralogy of Fallot at 22 weeks in utero. This congenital condition has four problems, the biggest being a hole in the heart and obstruction to lung blood flow. In addition, Kenza had very small lung arteries that were disconnected from each other and a genetic disorder called DiGeorge syndrome. “There were so many questions in my head when we got her diagnosis,” says Soukaina, “Would she be OK? Had I done something wrong?”
Dr. Donofrio kept a close watch on Kenza throughout the pregnancy. She also helped prepare Soukaina and her husband for the birth, as well as the surgeries and extensive care that Kenza would require once she arrived. Soukaina gave birth at a local hospital and was then transferred to the Neonatal Intensive Care Unit at Children’s National within a day. Kenza stayed for six weeks. “Dr. Donofrio prepared us for everything, including that Kenza might turn blue when she cried,” Soukaina says. “It was terrifying.”
Kenza’s parents often found comfort in the Bunny Mellon Healing Garden, a place to enjoy fresh air at Children’s National. They also appreciated nursing care, especially from certified nurse practitioner Kathleen Reid, CPNP-AC. Kathleen runs the home monitoring programs for infants like Kenza with some of the most complex congenital heart disease cases. Kenza’s family would continue monitoring her oxygen, heart rate and weight for several months until her final surgery. Kathleen also helped them care from multiple subspecialists. “Without her we might have been lost,” Soukaina says. “From the moment we came home and were learning how to do everything, she was there to help us find a solution.”
Kenza was 14 months old when she had her third surgery with Yves d’Udekem, chief of Cardiac Surgery. The procedure completed her heart repair, closed the hole in her heart and put her lung arteries back together.
“We trusted Dr. d'Udekem from the first time we met him,” Soukaina says. “He told me over and over again that he would take care of my daughter and that she would be OK. She was in great hands.”
After her final “big repair,” Kenza could have orthopaedic surgery to repair a club foot. She’s now busy learning to walk and talk. She still visits the hospital for follow-up appointments as well as physical and speech therapies. She has also traveled the world, visiting her grandparents in Morocco twice. When Kenza is older, she’ll need further surgery to change the connection from her heart to her branch lung arteries.
“It was a tough first year for our family,” Soukaina reflects. “But from the first day at Children’s National, staff there helped put us on a path to enjoying our lives. All I can say is thank you to everyone who played a part in her care. They saved my daughter’s life.”
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