Anna entered the world on May 7, 2001. She was the first born child to Elizabeth and Chip MacConnell. A normal pregnancy with two perfect ultrasounds. Early in the morning on May 8 she was transferred to the NICU, not for anything specific but her Dad was a Physician Assistant with privileges at the hospital and her Aunt was the nurse manager of labor and delivery. A few hours later a diagnosis of Tetrology of Fallot was confirmed. Anna spent several days in the NICU and plans were made for repair of her heart condition. A baseline hearing test indicated an issue with Anna’s hearing but her heart was of greater concern. Anna underwent open heart surgery on July 24, 2001. Her post operative course was complex as a more definitive hearing exam indicated Anna had a profound hearing loss. In addition she was found to have bilateral cataracts. A tracheostomy was performed due to airway issues with reintubation . More studies were run and a diagnosis of Congenital Rubella Syndrome was made. Elizabeth had been exposed to the Rubella virus very early on in her pregnancy. Unfortunately, many parents have elected to not have their children immunized against rubella, not realizing the harm they are doing to others. Elizabeth had received the MMR and her immune system increased production of antibodies to rubella and was able to wipe out the virus without experiencing any symptoms of the exposure. The damage to Anna however was irreversible.
As a result of rubella, Anna was deafblind. She underwent numerous eye surgeries. Her left eye provided “navigational” vision and her right was estimated to be 20/600. Anna had a cochlear implant placed and was able to hear in the normal speech range. She underwent tracheal laryngeal reconstructive surgery and was able to have her tracheostomy reversed. She had hip surgery for Perthes disease brought on by the use of steroids for her airway. Countless other procedures and surgeries were performed.
Through all of her challenges Anna continued with a spirit like none other. She was loved and admired by all of those whose lives she touched. Her radiant smile and love of family, friends and life were likely a cause of global warming.
Anna learned to communicate by sign language. She preferred to listen with her cochlear implant and communicate back through the use of ASL. “Miss B” was Anna’s first interpreter and the one we credit with giving Anna a voice. Anna attended school in the Centerville, Ohio school district. They provided a wonderful environment where Anna was able to thrive. The school worked with other students to teach them sign language to allow for communication with typical peers. Anna loved lunch and recess where she could hang-out with her friends.
In the fall of 2008 Anna recieved Acadia, a goldendoodle, from 4 Paws for Ability in Xenia, Ohio. Cadi was a constant companion through Anna’s last 4 years of life. Anna learned how to walk again, following her hip surgery,by holding on to Cadi. They learned to trust each other and Anna was able to ambulate in all situations. If Anna came to stairs and was uncertain of their height she would simply hold onto Cadi’s harness for support as she felt with her foot for height, knowing that Cadi would be there for support. They were an amazing team. Cadi was also trained for object retrieval and would pick up items that Anna had dropped. This often lead to games of object retrieval for the two of them. Anna’s cochlear magnet was scented with vanilla and Cadi could find it if it became detached. She also performed behavior interruption, basically snuggling and distraction, if Anna was having a rough day. Anna and Cadi rode the school bus and went to school together. Cadi was in the hospital with Anna and would ride on her bed as she went for procedures.
In the Fall of 2011, Anna’s heart began to fail. She had undergone an additional open heart surgery with a pulmonary valve replacement two years prior. Anna’s original cardiologist in Dayton (Dr. Dillon), took one look at her echo and contacted Cincinnati Children’s to let them know we would be coming down that evening. Anna’s initial Cincy cardiologist indicated that she wouldn’t make it out of the hospital. She was transferred emergently to the CICU where Dr. Lorts assumed Anna’s care. Dr. Lorts got her started on a plan and we were able to enjoy another Thanksgiving, Christmas, Easter and Birthday. Anna’s heart unfortunately continued to fail despite numerous medication changes, placement of a pacer/defibrillator and IV diuretics. She was turned down for a heart transplant, her only option for an extended life. Hospice/Palliative care was initiated and Anna was able to remain comfortably during her last few weeks.
Anna passed away peacefully and comfortably on September 1, 2012. She was held and surrounded by her family as she transitioned to her Heavenly Father’s arms in her forever Home.
We would like the thank Dr. Terrence Dillon (Anna’s first cardiologist), Dr. Angela Lorts, Dr. Mark Meyer (Starshine Children’s Hospice), and Dr. Derek Fletcher (Anna’s primary care provider through the Infants and Children with Special Needs program at Cincinnati Children’s) for the care they provided for Anna. Numerous nurses, NPs, Respiratory Therapists, and support staff will remain in our hearts .
Angels for Anna is made up of individuals whose lives have been touched by Anna. Through this organization we will strive to make the world a better place by doing something nice, for someone else, every day.