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When Michelle Anderson talks about her daughter Vera, people often ask if she has a nursing background.
“The medical profession would have been so on the bottom of my list for a job choice,” Michelle said, but she has become adept at navigating the medical world out of love for her daughters.
Vera, now approaching her second birthday, is on a waiting list for a kidney transplant. Meanwhile, she is struggling to live with underdeveloped kidneys and severe gastric reflux, which causes her to vomit more than a dozen times a day.
At night, Michael and Michelle Anderson hook the pony-tailed toddler to a dialysis machine at their home in Carlisle. Vera — who they affectionately call “V” — often claps and coos or sleeps through the procedure in her apple-green bedroom, as an IV pole stands guard silently in the corner.
The parents have a “helper” in the form of Vera’s big sister Maia, 3. And they also benefit from the help of a supportive family, the Visiting Nurses Association of Central Pennsylvania and Bayada Nurses, who visit five days and nights a week to help with the complex procedures involved in keeping Vera alive.
“They have been our life-saver,” Michelle said.
The visiting nurses have given the family confidence. Michelle, who is a part-time, work-at-home project manager for Webpage FX, can rattle off medical terms that would send most lay people running to the Internet. A white binder full of papers details Vera’s prescriptions, surgeries and test results. A daily log of medications ensures that no dose is skipped or given twice. And Michelle monitors every change in Vera’s condition.
“I’m terrible with blood and needles. Terrible. So it has been a learning curve for me,” Michelle said. But she and her husband have learned to work with the three tubes entering Vera’s small body — a feeding pump, a Broviac catheter and a mediport. And Michelle frequently gives Vera injections.
‘A complete repeat’
Part of the Andersons’ motivation to save Vera stems from loss.
In 2007, they suffered a miscarriage. When Michelle got pregnant again, complications arose. Their daughter Mileva was born Feb. 5, 2008, but lived only 17 days.
Michelle then became pregnant with Maia, who was born healthy.
But when she became pregnant with Vera, “it was like a complete repeat” of her nightmarish pregnancy with Mileva. At 26 weeks gestation, doctors told Michelle she had too little amniotic fluid.
Like before, she became a patient in Penn State Milton S. Hershey Medical Center for more than a month, saw the same nurses and suffered the same medical issues. She spent her 30th birthday in the hospital.
Dreading the same heart-wrenching outcome, “it was one of the worst times of my life,” Michelle said. But this time, she was determined to take a baby home with her.
Vera was born on June 18, 2010, and while she didn’t have the same breathing issues Mileva had, she developed severe reflux and then kidney issues.
Vera remained in the hospital for a few weeks after her birth. While there, Michelle noticed her daughter was twitching, but it was attributed to her medication and Vera was discharged. Later that night, Vera stopped breathing. Michael administered CPR at home, and Vera was airlifted to Penn State Hershey Children’s Hospital, where she stayed for three months.
By the time she was 6 months old, Vera had begun dialysis at home.
Every night, Michael slips on a surgical mask and gloves and hooks Vera up to a dialysis machine. The machine runs for 12 hours, cycling through her small system 10 times a night, removing the waste from her body into a collection bin by the crib.
In a quest for answers, doctors have now discovered that Michael, a tech support specialist at Shippensburg University, has branchiootorenal — or BOR — syndrome. BOR syndrome is a genetically based disorder characterized by malformations of the ear and kidneys, which can lead to hearing impairment and end-stage renal disease. BOR manifested itself in Michael with a hearing loss, but in Vera and Mileva, it was more severe.
The BOR diagnosis at least gave them an explanation for their struggles. “It all came together,” Michelle said.
‘This is her childhood’
Vera now goes to doctors’ appointments three times a week and receives in-home therapy three times a week, along with the nursing visits.
Michelle said the constant vomiting is V’s biggest hurdle. Vera throws up about 15 times in every eight-hour period and is unable to eat or drink anything by mouth.
“It’s not just some spit up,” Michelle said. Vera throws up if she sees anyone eating or if they change her position. It limits their activities outside the house.
“To take her out is such a production,” Michelle said, noting they have to bring Vera’s medical equipment along. And, “her throwing up startles people.”
Vera is now on a waiting list for an adult donor kidney. Doctors believe the new kidney could fix most of her problems. Neither Michelle nor Michael can donate, though, because of their family history of kidney disease.
But despite the trials in Vera’s life, “she’s such a sweet baby. It’s amazing,” Michelle said.
Vera loves drawing, bubbles, toys and her blankets. She waves “hi” and says “bye” with gusto. Although she cannot yet walk on her own or crawl, she scoots on her bottom to get where she wants to go.
Despite Vera’s eight surgeries in 18 months and frequent trips to the emergency room, “this is her childhood. This is what it is.” Michelle is determined to make it fun.
On weekends, the family enjoys walking through Carlisle and the nearby Dickinson College campus, visiting shops and restaurants. They go to events with their families, who live nearby. And Michelle takes the kids on play dates with her friends and their children.
Maia seems unaffected by her sister’s illness. “It’s her normal. It’s all she’s ever known,” Michelle said. Maia will hold the bucket for her sister when she is sick and alert her mom to trouble if she isn’t in the same room.
Michelle said “this changed the way we work as a family”— in a positive way. Michelle and Michael balance each other.
Michael said that while he is more laid-back, his wife is more orderly. He is often the one to tell his wife to “take a step back and breathe.”
And Michelle knows that only she and Michael have that shared history — the miscarriage, the death of Mileva, the struggle to sustain Vera and one another. “It’s a whole new level of taking care of one another.”
“We have it bad, but it could be so much worse,” Michelle said. “Worse is not being able to take your baby home.”
Written by DIANE WHITE MCNAUGHTON For The Patriot-News
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