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
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
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