Being that I was expecting rare mono/mono twins, we had multiple ultrasounds, during one of which the doctors had discovered that Baby B, LeeAnn, had only one kidney and no bladder at all. Our little LeeAnn came into this world on February 12, 2009 weighing 4 lbs. and measuring only 14 in. long.
During her newborn evaluation, the Pediatrician had discovered more anomalies than originally anticipated. LeeAnn was born with a dysplastic kidney, imperforated anus, absent urethra, absent bladder, and two uteruses. The doctor told us right away that we had a very sick child and not to expect her to live past 3 days old.
At just 24 hours old LeeAnn faced her first surgery to receive a colostomy. Over the next 3 months in the NICU LeeAnn’s kidney was so sick she had multiple UTIs. It seemed as soon as we got one cleared up with antibiotics another showed its ugly face a day later. During an exploratory procedure to better understand LeeAnn’s anatomy, they found that she had a sever cloaca. Where most people have two kidneys with a ureter each that connect to a bladder, LeeAnn has the one kidney where the ureter was connected to her uterus as was her colon, which in turn was allowing the bacteria to back up to her poorly functioning kidney causing all of her infections. At 2 months old she underwent another surgery for a ureterostomy . Now LeeAnn has a little hole in her side that constantly drains urine, but this makes her diaper-ridden and unable to potty train.
Through the last 5 years we have endured several medical hurdles with LeeAnn. She had a broken leg due to a calcium deficiency. We were in the hospital for 17 days because e-coli bacteria from her colostomy leaked into her bath water and almost took her from us. She has been hospitalized for multiple surgeries, including a g-tube to help when she has lost her appetite and administering medications, having her colostomy take down procedure, and a port placed for easier access for lab work. LeeAnn has stayed at the hospital a handful of times for stomach bugs that hit her harder than most because of her weaker immune system. Due to LeeAnn kidney function her growth is stunted so she is much smaller than kids her own age, even her identical twin sister. LeeAnn takes at least 5 different medications, sometimes as many as 9 to help her feel well, keep to her healthy, and make her grow and gain weight. LeeAnn is now 5 years old…I’d say we have made it past that 3 day mark that the doctors said we wouldn’t when she was born!!!
We are about to face our toughest battle yet! We have to move her and our entire family across two states for her to receive the best possible medical care. Her doctors here in New Mexico feel that it is best for her to seek treatment at the Children’s Medical Center of Dallas, TX. There is an entire team of doctors preparing for LeeAnn in Texas, whereas in New Mexico there are only a few doctors who are not familiar with a case as complex LeeAnn’s. LeeAnn is going to face multiple evaluations, tests, and procedures to get ready for reconstructive surgery to build her a bladder and new urinary tract. It isn’t feasible or affordable to be traveling back and forth as we also have 4 other children ranging in age from 18 months to 10 years. We must make a few trips before uprooting everyone to find housing, employment and schooling for our other 4 children as well. All of these evaluations, tests, procedures and reconstructive surgery are in preparation for LeeAnn’s kidney transplant. LeeAnn cannot get her kidney until her body has grown and gained enough weight to house an adult’s kidney. LeeAnn is now in end stage renal failure with only 23% kidney function and the only cure is a kidney transplant. Time is of the essence.
Update (Dec 9, 2014) We were able to move to Dallas in May, LeeAnn had her first surgery in September to undergo a 9 hour surgery to help construct a viable urinary tract. In the past two weeks, LeeAnn got really sick. She developed a UTI that became septic meaning the infection went into her blood. This sent her into complete renal failure. We had to go through an emergency placement of a hemodialysis catheter to start dialysis in hopes to get her working towards her transplant more sooner than later. We will start the work up paper work and tests at the beginning of the New Year shooting for a late spring early summer transplant. BUT her urologist still has 2-3 more surgeries to complete before we can do her transplant.
- Macye Boyd
- Tony & Angela Gillespie
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