Photo by Ana Good.
The Greenhalgh family: Adam, Walker, Wade and Kitty.
Walker Van Zile Greenhalgh has a smile that lights up a room. At just over a year old, his crystal blue eyes twinkle with curiosity as he explores the world around him. His bright red hair, still baby-thin, seems to match his personality. On a dreary, rain-soaked afternoon in January, Walker giggled and cooed as he crawled from room to room.
Walker’s cheerful and playful demeanor make it hard to believe that in his short life, his little body has already endured so much.
It was only just a year ago that Walker’s parents, Kitty and Adam, were in grief counseling, preparing for what they believed to be the inevitable: doctors hadn’t expected Walker to make it full-term. If he did, they told his parents, he’d live a few hours, maybe a few days at most. While in his mother’s womb, Walker had been diagnosed with failing kidneys. Few believed he’d make it to his first birthday.
This April, Walker will continue to defy expectations when he serves as the Patient Chair for the Birmingham Kidney Walk, helping to bring awareness to kidney disease and raising money to find a cure.
From joy to tears
When Kitty and Adam found out their oldest son, Wade, would soon have a sibling, the family celebrated with a cake-reveal. Wade, now 5 years old, cut the cake to reveal he would have a baby brother.
Everything seemed to be progressing as usual, Kitty said, during the first few months of her pregnancy. At around 20 weeks, doctors informed her that Walker had bilateral dilated kidneys and diagnosed her placenta previa, which can cause severe bleeding before or during delivery. Because it is something that usually self-resolves and is often found in ultrasounds, doctors told Kitty they’d continue to monitor Walker’s kidney development and see her in a few weeks for another checkup.
At 29 weeks, however, the ultrasound revealed Walker’s kidneys had taken a turn for the worse. There was no amniotic fluid protecting Walker anymore, which meant his life was at risk. He was at risk for cord compression, as well as severe pulmonary hypoplasia, which would mean the incomplete development of his lungs.
“Things didn’t look good,” said Adam, as he sat inside his Mountain Brook home recalling a much darker time. “They told us that if Walker did make it through the pregnancy, he wouldn’t live much longer than 72 hours.”
The best case scenario, doctors told them, would mean a lifelong dependence on medicine and a necessary transplant down the line. Problems with kidneys are often soft markers for Down syndrome and other abnormalities, said Kitty, which meant the difficulties Walker might face were endless.
“It was heartbreaking,” said Adam, “fearing the unknown.”
Doctors immediately started Kitty on steroid shots to help give Walker’s lungs a “boost” in anticipation of a premature delivery. They also recommended the family prepare for the possibility that Walker might not survive.
“We prayed a lot in his room,” said Kitty. “We needed a miracle. Our church really stepped up and we also started attending grief counseling sessions. We needed to prepare for what life would be like if we lost a child.”
Area communities also rallied around the family. Adam owns Greenhalgh Insurance agency in Cahaba Heights, and Kitty’s family owns Savage’s Bakery in Homewood.
In the depths of the family’s fear and sadness came a lot of confusion. Due to HIPAA laws, hospitals couldn’t share details about other patients with the Greenhalghs, making theirs a lonely journey.
“We didn’t know anyone at the time who had gone through anything like this,” said Kitty. “There were plenty of awareness groups for other diseases, but nothing for babies struggling with such bad renal failure.”
Part of the reason, said Lacey Updegraff, Central Alabama Regional Director of the Alabama Kidney Foundation, is that severe renal failure is not that common among babies.
“All situations are different,” she said, “but Walker’s story is definitely far from the norm.”
Surpassing Expectations
Kitty and Walker made it 35 weeks, and on Oct. 23, 2014, Walker made quite an entrance into the world.
“He came out screaming and peeing,” said Kitty with a laugh. “It was awesome.”
After birth, he was immediately taken to the NICU. Though his kidneys were working, they were working too hard. For two agonizing days, the family waited to see if Walker would survive. Walker remained in the NICU for 10 days before being transported to Children’s of Alabama for renal failure, as well as to undergo a procedure to provide him with a gastronomy tube to ensure he received necessary nutrients and medicine directly into his stomach.
On Nov. 11, the Greenhalghs returned home with the latest addition to the family. “We were able to bring our baby home,” said Kitty.
For a few weeks, everything seemed to be fine, until the Sunday after Thanksgiving when Walker was readmitted for vomiting and dehydration. Attempts to rehydrate Walker only made things worse; he was in complete renal failure and unable to expel fluid from his body. In a matter of hours, his tiny 4-pound frame had swollen to over 7 pounds. His sodium and potassium levels were so off he was at risk for seizures.
“Once again,” said Kitty, “we weren’t sure if he would make it through the night.”
Doctors transferred Walker to the PICU at Children’s, where they anticipated having to start him on dialysis overnight. When his numbers leveled out, doctors instead inserted a nephrostomy tube and operated on Walker to re-route his ureter on the left kidney.
Surpassing everyone’s expectations, Walker has been able to stay off dialysis and his kidney function has dramatically improved. Still, the damage to Walker’s kidneys is irreversible. He has been diagnosed with chronic kidney disease caused by obstructive nephropathy.
“Now we pray he doesn’t get sick,” said Adam. “He’s still at risk for renal failure.”
Together, and with the help of their family and friends, the Greenhalghs continue to care for Walker and enjoy him every day. Five different medications three times a day and supplemented formula via the g-tube help keep Walker growing and playing.
“CKD does not go away,” said Updegraff. “There is no cure and patients tend to have a gradual decline in kidney function.”
Eventually, doctors expect Walker will outgrow his kidney function and need a kidney transplant.
“Our prayer is that he will go farther down the road than they are expecting him to,” said Kitty.
Through all the unknowns, the Greenhalghs said they have grown stronger as a family, as a couple, as parents and in their faith.
“One of Walker’s doctors once told me, ‘Your days of unknowns have just begun,’” said Kitty.
“But what I came to realize over time, is that our days of unknowns have always been and always will be. We were forced to live that way, but we should always live that way, in total dependence on God.”
Kitty said she hopes that sharing their story will help spread awareness and inspire communication among others with a similar diagnosis.
“It always helps to be able to call someone up who has gone through the same thing,” said Kitty.
The 2016 Birmingham Kidney Walk will be held April 30 at the Samford Track and Soccer Stadium, Samford University. The Greenhalghs’ group, “Walker’s Warriors,” is led by their family verse, 2 Corinthians 5:7: “For we walk by faith, not by sight.”
Donations from the event will benefit the 3,500 kidney patients across Central Alabama. To register, or donate to the Greenhalgh’s cause, visit birminghamkidneywalk.org/walkerswarriors.
For more information, visit alkidney.org.
