By Brooke Schultz
Tell us your story.
Rhianne is truly a miracle and we believe that her miracle has been Children's. Her official diagnosis list includes 26 separate diagnoses. So severe was her prognosis, the neonatologists at Sacred Heart sent her home on palliative care, with an estimated life span of a few weeks to maybe months. However, our little warrior fought to the age of 8 months, upon which she was transferred to Children's for a consultation evaluation.
Rhianne began peritoneal dialysis at less than 2 years old, followed by several harrowing months of hemodialysis while the nephrology team searched for a donor. Rhianne received a kidney with literally hours to spare. The next months were incredibly difficult as she struggled to live- and her doctors and nurses never left her to fight alone.
Rhianne lived and was raised for 3 1/2 years at the Ashley House when not at CHRMC, never for a moment depreciating their care of her, and it is because of them and the staff at Children's that Rhianne made it through.
We brought her home in 2006. Since that time, Rhianne has had countless tests, procedures and treatments to sustain her and help her succeed. She lives a full life at home with pets, activities, school and most recently a new foster/adoptive sister.
After almost four years with her kidney, Rhianne was seen for an apparently unrelated illness and found to be in renal failure due to acute organ transplant rejection. Still, her Children's family has not given up and treats us, her family, as much as she, the patient. Our little fighter continues to laugh and play. She is anxious to go home and move on with her life.
What does Children's mean to you, your child and your family?
Children's means literally the difference between life and death to our little angel. She would not have made it to this point without the support, dedication and love she has received in her life from her care teams: Drs. Healy, MacDonald and Smith from kidney transplant; Dr. Symons and Marian Sinkey RN/BSN, who have taken us into their world as if we are family and handle all the ups and downs of nephrology health; Dr. Song, whom has created a dancer, runner, and gymnastics nut out of a child who it was said would never walk, may never crawl, and would need help to sit up; Dr. Avellino, who released her spinal cord compression when it looked as if those hard-won skills could be lost. Dr. Waldhausen, whom has been Rhianne's constant through her many surgeries. Drs. Mitchell & Grady, who actually built an entire system without which Rhianne could not have progressed far enough to even receive her life gift transplant.
Rhianne has been seen and is monitored by almost every specialty in this hospital, all of them working with her, us, and together to give Rhianne not just life, but an extraordinary quality of life, even during hospital stays, when her nursing team on G4, her IV team, lab techs, and special volunteer Auntie Nancy M. go out of their way every day to make Rhianne as comfortable, happy, and occupied as possible. We appreciate everyone so very much. We (Rhianne's dad & I) are so blessed to have been chosen as our baby's forever family, and so grateful to everyone who continues to support us and her on her life's journey.