ALBUQUERQUE, N.M. — LeeAnn Sweeney was sick with a cold the day I stopped by her family’s home in Edgewood, so I was not fortunate enough to experience what her mother calls her bubbly personality and her, well, precocious nature.
“Oh, she has an attitude,” Tiffany Fincher said, chuckling at her pretty, passive 5-year-old daughter sniffling and coughing and frowning on the couch. “She knows what’s what. She usually lights up the room. I think she’s more advanced than her friends.”
A few sniffles and sneezes, however, are nothing compared with what Mother Nature has thrown at LeeAnn.
She wasn’t expected to live more than three days, born as she was without a bladder, a urethra, a second kidney and several other defects. She was saddled with a barely functioning single kidney and two uteri – a set of birth defects referred to as VATER syndrome.
VATER is an acronym for the parts of the body most often affected: vertebrae, anal, trachea, esophagus and renal. It’s an extremely rare syndrome with an unknown cause.
“They say between 2003 and 2014, only 32 people in the country were born with this,” said Fincher, who has out of necessity become something of an expert on the subject. “LeeAnn is one of those 32.”
It’s as if the parts of LeeAnn’s plumbing were shuffled about in a prenatal box and put back together in a horrific jumble.
One might never suspect, though, that the pretty little girl in cowboy boots on the couch is any less healthy than her twin sister, Alayna, who was not similarly affected. The girls are identical twins with the same big brown eyes and shiny dark hair, though LeeAnn’s condition has stunted her growth, making her 4 inches shorter.
It was Alayna’s fetal healthiness that kept the amniotic sac and placenta both girls shared from withering. Alayna, Fincher likes to say, saved LeeAnn’s life in the womb.
Then it was up to the neonatal physicians at the University of New Mexico Hospital to continue to keep her alive.
“They didn’t think she was going to make it,” said Fincher, who besides the twins shares the home in Edgewood with her husband, Levy, and three other healthy children, ages 1, 8 and 10. “We did a lot of praying. Our whole church did. We put her in God’s hands.”
And in the surgeons’ hands. Within 24 hours of her birth, LeeAnn was fitted with a colostomy bag and her colon rerouted away from one uterus. At two months, the ureter from her lone kidney was clipped from the uterus and connected to a hole just above her hip. That allowed the urine to drip into a diaper.
It wasn’t a perfect fix, but it was better than allowing the urine to flow through her vaginal opening, which caused repeated urinary tract infections.
LeeAnn still wears a diaper, which must be changed hourly. She no longer requires the colostomy bag, but she remains unable to control her bowels.
At night, the diaper is changed every three to four hours, but even then Fincher said LeeAnn is often soaked and her bedding must be changed and washed daily.
LeeAnn also has a small button-like projection in her abdomen where she is fed additional liquid nourishment. Another tube where blood is drawn and intravenous medication is administered protrudes from her upper chest. She takes a series of five – though sometimes as many as nine – medications daily.
But those medications and the many surgeries she has had thus far will not prevent a looming concern: Her one kidney is failing.
“She is in end-stage renal failure. Her kidney is only 23 percent functioning,” Fincher said. “She needs a kidney transplant.”
That can’t happen until her body is big enough to handle what will likely be an adult organ. And that can’t happen until her health improves.
LeeAnn’s case is so complex that her team of doctors in Albuquerque has recommended that her care be transferred to the Children’s Medical Center in Dallas. There, a team of physicians is preparing to build her a bladder out of her own intestines in preparation for a kidney transplant. It’s a long, delicate procedure that will take time – a commodity LeeAnn has a limited supply of. Doctors estimate she has about a year left before her kidney fails.
So the family is moving to Dallas to be close to LeeAnn’s new team of doctors. Testing for the procedures is scheduled to begin in April. Fincher is already packing up what she can, selling what she can’t and praying her husband, a welder, can find a new job to keep the family running as smoothly as a healthy kidney.
In the meantime, friends and family are organizing bake sales, raffles and fundraisers to help defray the cost of moving.
For a child with so much internal commotion, LeeAnn stays fairly chipper externally. Being sick has made her wise, her mother thinks. She reads better than her sister. She gets tired easily, but she rarely complains, Fincher said.
“She’s aware that things are harder, but she doesn’t dwell on it,” her mother said. “She knows she is smaller, but she doesn’t ask, ‘Why am I different?’ She just asks ‘How come I’m always so hungry?’ ”
With that, LeeAnn gets up from the couch and smiles.
UpFront is a daily front-page news and opinion column. Comment directly to Joline at 823-3603, firstname.lastname@example.org or follow her on Twitter @jolinegkg. Go to abqjournal.com/letters/new to submit a letter to the editor.