A stranger’s gift of life
Warrenton woman donates kidney to one-year-old she had never met
By Brett Auten
Cardinal Glennon Children’s Hospital in St. Louis was the location last week for a special reunion.
A year ago, on Jan. 18, 2016, a virtual stranger donated a kidney to the Bahr family of Arnold and gave this family the gift of life to their then 14-month-old son, Blake.
Heather and Nick Bahr 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. 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. At three days old, Blake had his first surgery to place a dialysis catheter. Blake needed dialysis to survive because the one kidney he was born with was only functioning at seven-to-10-percent and the Bahrs spent six weeks in the hospital’s Neonatal Intensive Care Unit.
A medical battle
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, they returned to the hospital to start dialysis. 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.
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 the family 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. 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 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.
An unexpected hero
One of those followers was Laurie Jansen of Warrenton. One night, Jansen was having a tough time sleeping so she pulled out her iPad and was drawn to the Brave Blake’s Battle Facebook page. Jansen reached out to Heather and offered to become a living kidney donor. Blake’s story hit home with Jansen. In 1997, Jansen’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.
After months of testing, Laurie turned out to be a perfect match for Blake and the transplant occurred on Jan. 18, 2016.
“My family was scared and nervous but very supportive,” Jansen said. “They knew that this was very important to me. You see a lot of stories like this (on Facebook) and my heart goes out to them. I knew this was something I could do.”
Obviously, the two families became close and once they got to know each other, found an odd coincidence. Heather Bahr grew up in St. Charles and in fifth grade moved to Warrenton where she went to the same elementary school where Jansen is now the school nurse.
A happy, healthy ending
Fast forward to 2017 and all parties are doing more than fine.
“I feel great,” Jansen said. “You never would have known I had surgery. A couple weeks after it I was back at work.”
Quick to shun the spotlight and attention, Jansen said the focus of this story should be Blake and others like him and the importance of organ donation.
“Aside from the testing, it was about two weeks out of my life to be able to change this little boy’s life forever,” she said. “To see the drastic changes in Blake, it was a no-brainer. Nothing (physically) changed for me. I did gain more family and hopefully raised awareness.”
As far as Blake and the Bahrs, life as never been better. Gone are the days of Blake throwing up 10-to-15 times a day and being incredibly lethargic.
“Blake is doing absolutely amazing,” Heather Bahr said. “Since Laurie donated her kidney to him a year ago our family has completely avoided hospitalizations. Before the transplant, Blake was on a feeding tube 18 hours every day and hooked up to dialysis for 13 hours every night to survive. Now he is completely tube free. He wasn’t able to take a bath while he had a dialysis catheter so his first bath was at 14 months old and now he loves it. Blake eats and drinks everything in sight and it’s a true miracle to watch.”
Heather Bahr said the majority of children with his condition remain on feeding tubes for life to keep up with the high fluid requirements for their new kidney, but not Blake. Last week he also started walking completely on his own. Prior to transplant, he was not mobile at all. Blake has had physical therapy three times a week since he was born and his therapists are blown away. He no longer needs a walker or canes for support. He has so much more energy and is just a different kid all around.
“Every day were excited to wake up and see what is next for Blake because of Laurie’s life-saving gift to him,” Heather added. “We are beyond blessed to have Laurie as part of our son. She saved his life and there will never be a day that goes by that we don’t thank God for bringing her into our lives. Our families have become so close through this journey and I know that will continue as Blake grows up. He loves looking at pictures of Laurie and watching videos of them together. They will have a very special lifelong bond.”
For more information about the Children’s Organ Transplant Association (COTA), or to find a COTA family in your area, please email email@example.com.
CUTLINE: Submitted photos
Cover-kidney1 Laurie Jansen holds Blake Bahr, the little boy to whom she donated a kidney. The two had never met until Jansen read about Blake’s medical needs on Facebook.
Cover-kidney2 This side-by-side picture of Blake Bahr were both taken on New Year’s Eve one year apart. On the left Blake was on dialysis and full of fluid from his treatments along with needing a feeding tube. On the right he is tube free and in good health.