Mackenzie's complete story is below.
For updates and donations please see our new page Kenzie needs a Kidney
Mackenzie, or Kenzie as we all know her, was born on April 25th 2003. The doctors immediately noticed she had a very serious issue, a cloacal anomoly. A cloacal anomoly is where the vaginal canal and anal canal are both connected into the urethra. The next day they performed surgery at Egleston to give her a colostomy. During her surgery they discovered she was also born with ectopic ureters; her ureters connected into her vaginal canal instead of into her bladder.
Mackenzie came home from the hospital about two weeks after she was born. The day after Mackenzie turned one, with cake still in her hair, they performed surgery to close Mackenzie's colostomy. After one year of parenthood we changed our first poopy diaper and we could not have been happier. We were enjoying being a parent of a one year old when Mackenzie started to get sick quite often. She was getting a UTI (urinary tract infection) about once a month. After almost a year of fighting infections, her urologist decided to do a urinary diversion to cut down on the risk of UTIs.
In January of '05 a few months before her second birthday, Kenzie underwent her fourth major surgery. Both of her ureters were pulled to the lower right part of her abdominal wall to create a stoma. Her kidneys now drained straight into her diaper with no internal area for her to store urine. At this time the specialists came to the conclusion that Mackenzie has a concentrating defect in her kidneys, meaning her kidneys did not concentrate her urine, so whatever fluid she took in went straight through her. Her body was not holding onto the fluids she needed to remain hydrated. We would later find out that the constant dehydration was very damaging to her kidney health. They also discovered her left kidney was dramatically weaker than the right.
Mackenzie was in pull ups until elementary school and we made the decision to start using ostomy bags for her urine. Mackenzie could now go to the restroom with the rest of her class and be "normal". She had a new found freedom that she loved, but with this freedom came a risk. The ostomy bags allowed bacteria to collect around her stoma and she quickly began to get UTIs again. One of these infections made it to her blood and she had to be taken by helicopter to scottish rite where she fought for her life for five days in ICU.
After a lot of prayers and research we were lead to the children's hospital in Cincinnati, Ohio. We went to Ohio to see a team of doctors who specialize in treating children similar to Mackenzie. We stayed in Ohio for three weeks seeing several specialists and running multiple tests. We were very happy with the results of our trip to Ohio but we also were shocked to be told that Mackenzie was in stage two, borderline stage three, kidney failure. We had been seeing specialist in Georgia her entire life and we were never informed of her failing kidney health. We were also informed that with her current urological state she is not eligible for a kidney transplant. The doctors in Ohio have made a medical plan that will get Mackenzie to the best quality of life. On September 25th Mackenzie underwent a fourteen hour surgery to begin urological reconstruction. She was in the hospital for three weeks recovering. The goals of the surgery were a complete success unfortunately we discovered that her kidneys are in worse shape than we previously thought. Her kidney health is so fragile that slight variences in her fluid or nutrition intake can affect her kidney function. Her doctors fear her kidneys may not last through puberty.
Mackenzie had her final surgery in the spring of 2014 to complete her urological reconstruction. This surgery lasted 12 hours and got Kenzie to her permanant medical set up. Unfortunately her kidney disease is the wild card deciding how long her kidneys will last before she will need to be placed on dialysis or a transplant list.
We had accumulated around $15,000+ in medical debt. Thanks to the donations we have recieved thusfar we have made a dent. Unfortunately her day to day care is still very expensive. With her medical supplies, daily meds and diet restrictions we are barely treading water. We still need help with travel expenses for multiple trips to New York and medical supplies. We appreciate any gifts that are given to help get us one step closer to the quality of life that Mackenzie deserves.
DonationsSee top donations
- Nina Ellis Frischmann
- Clancy Halsted
- Deanna Lane
- Damon Halsted
- Allen Halsted
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