‘We take it day by day’
Watch Baxter and Sebastian Brann run around the house, and you will have no clue both boys got new kidneys just three months ago.
And you may question their parents’ Christmas wish—for a calm, peaceful holiday. How realistic is that—with three rambunctious little boys?
But Jessica and AJ Brann have a unique view of “calm.” For years, they have dealt with an extraordinarily rare and terrible kidney disease that has overshadowed three Christmases in a row.
“Just to be able to be home as a family would be wonderful,” Jessica said.
So, let the boys run, laugh, shout, play, wrestle and (sometimes) fight—that’s peaceful compared to a trip to the hospital.
“I think there’s very few people on Earth that can relate to this family and understand the pain they have gone through,” said Alejandro Quiroga Chand, MD, a pediatric nephrology specialist at Spectrum Health Helen DeVos Children’s Hospital. “Luckily, they have each other. They are wonderful parents.”
The cause of the boys’ kidney disease, believed to be genetic, is so rare that they may be the only patients in the world with their exact condition, he said.
The pain the Branns have endured includes a terrible loss—their oldest son, Taylor, died of the disease at age 5.
In the past two years, Jessica and AJ have mourned Taylor, cared for Sebastian and Baxter through dialysis and transplants, and prayed their fourth son, Edison, would stay healthy.
“We take it day by day,” Jessica said, sitting beside AJ in their home in Holland, Michigan. “You do what you have to do.”
Love and marriage
For Jessica, 29, and AJ, 28, that means relying on teamwork forged through a relationship that dates back to their early teens. They became friends working in the “dish pit” at Camp Beachpoint, a summer Christian camp.
Eventually, they served as camp counselors. And their friendship blossomed into romance.
“We were 17 when we started dating, 19 when we got engaged and 20 when we got married,” AJ said.
Taylor, a baby boy with dark, sparkling eyes, came a year later.
“He had a very, very, very sweet temperament,” AJ said. “When we had the other boys, he was very nice and big brotherly.”
The first signs of illness surfaced in Taylor in December 2012, when he developed swelling around his eyes. His parents thought he had an allergic reaction to dust stirred up by the removal of carpeting from their home. The swelling persisted, and eventually Taylor underwent blood tests, a CT scan and a biopsy.
The diagnosis was focal segmental glomerulosclerosis. It is a rare disease that attacks the kidney’s filtering units, causing serious scarring and permanent damage.
A month after diagnosis, Taylor survived on dialysis. Jessica’s brother was identified as a match for a transplant, but Taylor did not live long enough for the surgery. He died May 27, 2013—on Memorial Day.
At the time, Sebastian was 2, Edison was 1½, and Jessica was eight months pregnant with Baxter.
The Branns took small comfort in one fact: Genetic tests for Taylor’s condition came back negative.
“We thought at least we don’t have to worry about our other kids,” Jessica said.
Another son diagnosed
Shortly before Christmas 2013, seven months after Taylor’s death, Sebastian showed the first signs of illness. His face swelled, just as Taylor’s had.
The Branns rushed him to the emergency department, and he was admitted to Helen DeVos Children’s Hospital.
“It was very devastating,” Jessica said. “We were just like—‘No. We just lost a child to this.’”
Sebastian’s kidneys responded to treatments, and his condition stabilized for most of 2014. That autumn, however, things went downhill. He spent nearly four months in the hospital, from mid-October to mid-February. The parents divided child care duties, with one at home and one at the hospital.
“We did all the fall holidays there,” Jessica said. “Christmas, Thanksgiving, Halloween and New Year’s.”
On Dec. 18, 2014, Sebastian underwent surgery to have his kidneys removed. As he recovered in the hospital, the Branns received another shock.
Baxter, then 18 months, showed the same swelling his brothers experienced. Baxter was admitted to the hospital and underwent a kidney biopsy on Christmas Eve.
Soon, the Branns had two boys on dialysis at home. Both boys also had feeding tubes, because they couldn’t eat enough to maintain nutrition.
2 transplants in 2 weeks
September was the month for transplants.
On Sept. 15, Baxter received a kidney donated by his father. Nine days later, Sebastian received a transplant with a kidney from an organ donor.
As Dad and the two boys recovered from surgery, Baxter developed complications that required him to return to the hospital shortly before Thanksgiving.
Sebastian joined his brother in the hospital on Thanksgiving Day. Both boys returned home that weekend, and fortunately, have remained stable since then.
“They are doing great,” Dr. Quiroga said.
A genetic mystery
The Branns have undergone extensive genetic testing to search for the cause of the boys’ disease. The results were negative for all known gene mutations. Because AJ is African American, his doctors checked for a mutation that particularly affects those of African ancestry, but that was negative, also.
Despite the rarity of this condition, Dr. Quiroga has treated a number of cases because Helen DeVos Children’s Hospital is a referral center for pediatric kidney disease and transplants. He also consulted pediatric specialists worldwide.
“Our conclusion is that this is a new mutation that hasn’t been described,” he said. “They are probably going to be the index case for this condition.”
The disease is likely an autosomal recessive disorder, he added. That means two copies of an abnormal gene must be inherited for it to develop, and each child would have a 1 in 4 chance of being affected.
Trees and scars
For the first time in three years, the Branns reluctantly put up a Christmas tree this month. It meant bringing out Taylor’s “First Christmas” ornament and the one with his tiny footprint.
But they were won over by the argument made by Sebastian, who is almost 6, and 4-year-old Edison.
“They said, ‘If you don’t, Santa won’t come. And he’s not going to bring you presents, and you will be sad. And we don’t want you to be sad,’” AJ said.
For Christmas, all three boys said they want snow—for a snowball fight.
They begged Dad to wrestle with them. Baxter and Sebastian took off their shirts to show the transplant scars that stretched along their bellies.
“I don’t have a scar,” Edison said. And his mom told him he could take off his shirt, anyway.
All three, bare-chested and wearing jeans, struck muscleman poses and grunted and giggled.
“They are happy kids,” AJ said. “So that’s a good thing.”
New year wishes
Managing their busy family and medical issues for the past three years, the Branns have relied heavily on both their families. Members of their church, Christ Memorial Christian Reformed Church, have provided meals and an array of necessities, such as diaper wipes and laundry detergent.
AJ left a job in sales and created a business as a photographer and videographer, so he would have more flexibility for child care needs.
The Branns keep friends and loved ones updated through their family Facebook page.
The page also serves as a place to post memories of Taylor.
“We use it a lot to encourage people to become kidney donors,” AJ added. “That’s a big deal to us.”
Long term, the boys will need close monitoring, but their prognosis is good post-transplant, Dr. Quiroga said.
“I think they are going to grow up and have a normal life,” he said. “They will be contributing members of society.”
If the Branns have their way, the New Year will bring good health for the kids and a chance to move ahead with school work and enjoy all the activities of childhood, without a trip to the hospital.
An ordinary life would suit them just fine.
“We are hoping for some kind of normal,” AJ said.