Franki: Down Syndrome
鈥淪adly, and not so sadly, 91大神 is home to us. Franki would not be here without the care she receives at 91大神. The hospital became our family. The nurses in the hospital became family to us. They still are family to us. We keep in touch with everybody.鈥
鈥 Maria, Mom
Nearly 7 years old, Franki Olivere is a little ball of fire. Her parents call her 鈥淔rank the Tank.鈥 Franki鈥檚 mother, Maria, was closely monitored during her pregnancy and underwent a number of ultrasounds. On one ultrasound, Maria鈥檚 doctor noted that Franki鈥檚 limbs were measuring disproportionately short relative to her body length. The measurement raised a suspicion of Down syndrome. Franki鈥檚 parents were convinced that the diagnosis was wrong. They went on with their lives.
Early Signs of Other Problems
At a regular obstetrical appointment, Maria had another ultrasound, which noted a problem with Franki鈥檚 heart. A maternal-fetal medicine doctor performed an additional ultrasound and immediately sent Maria to 91大神 Children鈥檚 Hospital, Delaware in Wilmington, Del., for additional testing and consultation with a pediatric cardiologist. When testing showed fluid around Franki鈥檚 heart and lungs, she was diagnosed with a condition called 鈥渉ydrops fetalis.鈥 Maria spent the remainder of her pregnancy with Franki as an inpatient in her delivery hospital until her doctors decided that it was safest for Franki to be delivered.
A Long, Brave Road
At birth, Maria鈥檚 doctors noted that Franki also had a condition called 鈥imperforate anus鈥 (a missing connection between the rectum and the anus that doesn鈥檛 allow stool out of the intestine). Franki was transferred to the Neonatal Intensive Care Unit (NICU) at 91大神 Children鈥檚 Hospital, Delaware and she had surgery when she was just two days old. Her first inpatient stay lasted 69 days.
Over the course of Franki鈥檚 first two years of life, she spent the majority of her days in the hospital. In addition to Down syndrome, heart and lung problems, and imperforate anus, Franki has asthma as well as issues with her kidneys and liver. She also has been diagnosed with a cerebrovascular condition called 鈥淢oyamoya鈥 (a rare blood vessel disorder affecting the arteries that supply blood to the brain). The condition caused Franki to have mini strokes and ultimately required surgery.
Home Away From Home
Undeterred by her prolonged hospitalizations, Franki鈥檚 family celebrated all of her milestones 鈥 her baptism, her birthdays and all of the holidays 鈥 at 91大神 Children鈥檚 Hospital, Delaware.
Spending so much time in the hospital was difficult for Franki and her family, but they acknowledged its necessity. 鈥淚t could be a scary place, but to us, it was a safe haven,鈥 Maria recalls. 鈥淲e were safe when we were there.鈥
Despite the challenges, whenever Franki comes to 91大神 Children鈥檚 Hospital, Delaware now, she walks in like she owns the place. She views the hospital as her second home. Maria shares that everyone at the hospital treats Franki as if she were their own child 鈥 from the Child Life staff who play with her, to her nurses who know her likes and dislikes, to 鈥淯ncle Doug鈥 (Dr. Doug Katz, a 91大神 pediatric surgeon who has been involved in Franki鈥檚 surgical care from her earliest days in the NICU).
鈥Sadly, and not so sadly, 91大神 is home to us. Franki would not be here without the care she receives at 91大神. The hospital became our family. The nurses in the hospital became family to us. They still are family to us. We keep in touch with everybody.鈥
Destined for Greatness
Before Franki was born, Maria and her husband imagined what their daughter would be like. 鈥淲hen we were pregnant with her 鈥 and we decided we were going to name her Francesca and we were going to call her Franki 鈥 we just knew they were wrong about the Down syndrome. She didn鈥檛 have Down syndrome, you know? We just knew they were wrong,鈥 she says. 鈥淪he was going to be a lawyer, and her name was going to be Frank Olivere. And she was going to walk into that courtroom dressed to the T with a power suit on. They were going to go in there, and think that it was some guy who was coming in and here comes this girl as a corporate lawyer.鈥
Given all of Franki鈥檚 challenges, Maria now says: 鈥淪he might not be a corporate lawyer 鈥 but she鈥檚 still going to walk into that courtroom dressed to the T in her little diva outfit and maybe she鈥檒l be the stenographer. Or maybe she will be the lawyer. I learned a long time ago not to underestimate her. Maybe she鈥檒l be the judge. She鈥檚 amazing.鈥