Bloomington, Indiana – January 9, 2017 – For years to come, January will be a month full of celebration and joy for the Bahr family of Arnold, Missouri. Last year on January 18th a virtual stranger donated a kidney to their then 14-month-old son, Blake, and gave this family the ultimate gift — the gift of life.
Blake’s transplant journey started early, actually while he was in utero. Heather and Nick Bahr were so excited when they learned the news of their pregnancy and they decided to have testing done to find out if they were having a girl or a boy. Heather and Nick were told they were having a baby boy, but they also found out the baby only had one kidney — and the kidney he had was in bad shape due to severe hydronephrosis. Heather was monitored closely for the remainder of the pregnancy and was put on in-hospital bed rest leading up to the baby’s birth. Baby Bahr was monitored in utero around the clock and the medical team decided to deliver at 36 weeks. In November 2014, Blake Bahr was born. On his second day of life, Blake went into kidney failure and was taken by ambulance to Cardinal Glennon Children’s Hospital in St. Louis.
At three days old, Blake had his first surgery to place a peritoneal dialysis catheter. Blake needed dialysis to survive because the one kidney he was born with was only functioning at 7-10%. Heather, Nick and Blake spent six weeks in the hospital’s Neonatal Intensive Care Unit. There were complications with the catheter leaking so the family was sent home to give Baby Blake time to heal before the dialysis process was started full force.
Two weeks later, Heather, Nick and Blake returned to the hospital to start dialysis. The infant was hooked up to a two-foot cord for manual dialysis treatment — 24 hours a day, seven days a week. In total, the Bahrs spent two and a half months in the hospital to work Blake up to a large enough volume so they could eventually use a home dialysis machine for 16 hours a day. During this time Blake contracted a respiratory virus that landed him in the hospital’s Pediatric Intensive Care Unit for 10 days. It was during this PICU stay Blake was tested by genetic doctors who discovered the baby had two, rare genetic conditions — Jacobson Syndrome and Overgrowth Syndrome.
Blake was in and out of the hospital for several months due to a number of complications. During a June 2015 hospitalization, the hospital staff was able to complete the workup needed for an eventual transplant. According to Heather, “We knew early on that Blake would need a life-saving kidney transplant. During his first year of life, Blake spent 135 days in the hospital, faced five surgeries and spent over a year on peritoneal dialysis anywhere from 13 to 24 hours every day.”
Heather and Nick started thinking about the mounting expenses the family had encountered to date, and would continue to encounter due to Blake’s inevitable kidney transplant. It was during this time that Blake’s Aunt Crista began to research the Children’s Organ Transplant Association (COTA). There were many family members, church friends, work colleagues and neighbors who were very anxious to find something they could do to help the beloved Bahr family. Fundraising for transplant-related expenses became the obvious choice for the family’s extensive support network.
COTA uniquely understands that parents who care for a child or young adult before, during and after a life-saving transplant have enough to deal with, so COTA’s model shifts the responsibility for fundraising to a community team of trained volunteers. In early July 2015, a COTA fundraising specialist traveled to the St. Louis area to meet with the volunteers for the COTA campaign in honor of Blake B and walked the large group of attendees through the entire process. Within days of their on-site training, this COTA team was off and running, and within months these COTA volunteers raised more than $90,000 for transplant-related expenses.
COTA is a 501(c)3 charity so all contributions to COTA in honor of Blake are tax deductible to the fullest extent of the law, and these COTA funds are available for his lifetime. “From the first moment we started working with COTA, we felt a sense of relief and gratitude,” said Heather. “COTA’s staff was incredibly accessible and always available to answer questions. When we first became a COTA family I was so pleasantly surprised to receive a phone call from COTA’s President welcoming us. Everyone at COTA is always so friendly and willing to help, and that gives us such peace of mind and hope for the future.”
From early on in Blake’s transplant journey, Heather used a Facebook page called ‘Brave Blake’s Battle’ to regularly share updates about Blake’s health challenges, photography that told the story of a baby on dialysis and short videos that showcased this family’s daily struggles as they waited for ‘the call’ that a kidney had been found. Brave Blake’s Battle Facebook effort grew exponentially and had followers from all over the world.
One of those followers was Laurie Jansen of Warrenton, Missouri. Laurie was having a tough time sleeping one night so she pulled out her iPad and was drawn to the Brave Blake’s Battle Facebook page. Laurie actually reached out to Heather and offered to become a living kidney donor. Years before in 1997, Laurie’s mother received a kidney from a deceased donor and did very well post-transplant. Seventeen years after that transplant, Laurie’s mother needed a second kidney and Laurie wanted to be her mom’s donor. However, her mom passed away unexpectedly due to complications from End Stage Renal Disease (which is the same disease Blake has) but the idea of being a kidney donor stuck with Laurie.
“Blake’s life forever changed when an incredible woman came into our life offering to give him a second chance at life,” said Heather. After months of testing, Laurie turned out to be a perfect match for Blake and the transplant occurred on January 18, 2016. “Prior to transplant our families did not know each other but when we met for the first time, it was like we had known each other for years. Laurie is an amazing woman and now our families have a life-long connection.”
Facebook followers of Brave Blake’s Battle are very familiar with Blake’s huge smile and determination. Blake’s recovery continues to be a full-time job for Heather. Blake is mastering walking while his legs are being strengthened by special braces and visits from various specialists. He is also learning to eat table food, which is a challenge for infants who have been bottle and tube fed during their initial months of life. Blake loves books and he loves Elmo. His laughter is contagious and thousands of his Facebook fans are cheering him on almost daily.
According to Heather, “Our family is so blessed to have the Children’s Organ Transplant Association by our side during this journey. I left a job I loved to care for Blake while he needs it the most. COTA funds that were raised by our family, friends, community and church in honor of Blake have taken away the worry about finances. Knowing that COTA is there for us has given us such peace of mind. There are no words to describe the gratitude we feel for COTA’s support. The fact that the dollars raised by COTA volunteers in honor of our son will be available for his lifetime has allowed us to worry less about the transplant expenses and focus on the most important thing — our son’s care.”
“We do not know what the future holds for Blake but we do know that because of Laurie’s beautiful and selfless gift of life, in addition to having COTA’s amazing team of professionals by our side, we are excited and hopeful to see what lies ahead for our family in 2017 and beyond,” Heather said.
The Children’s Organ Transplant Association (COTA) is a national 501(c)3 charity that provides fundraising assistance and support to transplant families. Since 1986, COTA’s priority is to assure that no child or young adult is denied a transplant or excluded from a transplant waiting list due to a lack of funds. 100% of funds raised in honor of transplant patients are used for transplant-related expenses.