Fourteen-year-old Da’Quan Nichols-Cox from Milwaukee was a smart, talented and loving kid who liked football, basketball and his English and math classes. He’s also a hero, according to his little brother.
On Nov. 21, 2015, Da’Quan died at Children’s Hospital of Wisconsin from injuries sustained in a car accident. His mother, Inica, was faced with a question she never thought she’d be asked: “Do you want to donate your child’s organs?”
Overwhelmed with emotion, Inica sought input from her then 6-year-old son and 12-year-old daughter. They had no hesitation.
“If Da’Quan’s going to help other kids, then he would be a hero,” said his brother.
That selfless decision made just a few days before Thanksgiving set into motion a series of events that has never before been seen at Children’s Hospital of Wisconsin: the organs were determined to be a match with five patients at the hospital.
Those children and their families had waited a collective 544 days on heart, kidney and liver transplant lists. In just one day, they received the news that would forever change their lives.
Kerri Evensen of Lake Mills, Wisconsin, was preparing to donate part of her liver to her 4-year-old son, Auden. In fact, she was at Froedtert Hospital ready to go into surgery the next morning when her doctor came into the room to inform her of a deceased donor whose liver could be a match for Auden.
“I was in pure shock, but I truly trusted the Lord was saying ‘go this route,’” Kerri said.
Auden was diagnosed at 9 weeks with a liver and lung disease called alpha 1 antitrypsin deficiency syndrome.
Kerri and her husband were hopeful that Auden could lead a “semi-normal life,” but after his first birthday they learned he would need a liver transplant once he got a little bigger and stronger.
When he was listed on July 3, 2015, Kerri immediately knew she wanted to be his donor.
That decision ended up saving her own life, as doctors discovered during the testing process that she had an aneurysm. She had surgery and went through a waiting period before attempting to donate again.
Auden, meanwhile, wasn’t a kid at all, Kerri said. He was often at the hospital, he had to be tube fed, and he needed medication to drain belly fluid.
“He wasn’t able to go to school. He was always sick. He had no friends, no playdates,” Kerri said. “His life revolved around hospital stays, doctor visits and medicine.”
Auden’s family waited 139 days for his new liver.
His mom, Becky, said everything was perfect when he was born, but he went into cardiac arrest 28 hours later.
Tyler was diagnosed with hypoplastic left heart syndrome, a complex and rare heart defect. He went on to have four open heart surgeries at ages 8 days, 3 months, 7 months, and almost 3 years. These took place at a hospital near their home.
He was fairly healthy between the ages of 5 and 14, but it was at his yearly check-up in 2014 when doctors discovered a blood clot in his heart.
Tyler’s family decided to transfer his care to Children’s Hospital of Wisconsin, where he was listed for a transplant on Oct. 7, 2015. His family waited 48 days for his new heart.
When Jean Nylund of Milwaukee received the news of a possible liver match for her 18-month-old daughter, Sara, her mind went blank and her body numb.
“Nothing went through my mind except Sara — I love my Sara — and my next thought was the poor family who lost their child and how you thank them,” she said. “How you thank them so much, but there’s no thank you that’s enough.
Sara was diagnosed at 10 months with a liver cancer called hepatoblastoma.
After she was listed for a transplant on April 27, 2015, she endured nine rounds of chemotherapy, several hospital stays and a terrifying allergic reaction.
Meanwhile, the family was called in seven times for possible matches.
“The waiting and what we had to do to keep her healthy was just indescribable,” Jean said. “I didn’t know if my baby was nauseous or if something hurt. It’s so hard because you’re just waiting and waiting and having the realization that you’re waiting for another person to lose their child to save yours. As a parent, you will do anything you can to save your child, and you want the other families to do that, too. Knowing they can’t is very humbling and heartbreaking.”
Sara’s family waited 210 days for her new liver.
Ten-year-old Sasha of Racine was about to embark on a field trip to the planetarium when her dad caught the school bus just in time. He had exciting news of a potential kidney match.
“She was disappointed about missing out on the field trip until she realized why she was being picked up that day,” said her mom, Elizabeth. “Once we got the news she was a match, we just prayed and hoped that all would go well in the operating room. My heart went out to the donor’s family, and I prayed they were comforted during this difficult time.”
Sasha was 9 when she was diagnosed with kidney dysplasia, a condition in which the internal structures of her kidneys did not develop normally while in the womb.
Sasha’s parents had concerns about her health and pushed to get tests done to learn what was behind symptoms that included her small size, fatigue and the purple hue under her eyes and on her fingertips.
“If you ever feel something is wrong with your child, don’t ignore it because it could be something,” Elizabeth said.
Sasha was already reaching end-stage renal disease, but she had to wait a year to be listed for a transplant while she took human growth injections. (Bone tests had showed the third grader was the size of a kindergartner.)
She was listed for a transplant on Aug. 10, 2015.
For the next 105 days until she got her new kidney, she had to be taken out of school three times a week for dialysis, she couldn’t play sports or swim, and she had to be on a restricted diet.
Aliscia Parr-Retzlaff of Big Bend, Wisconsin, was at work when she got the call of a potential kidney match for her 2-year-old son, Emmitt.
“As stressed out as I was about my son getting a kidney, I broke down because I felt so much sorrow for that family who was going to lose their child,” she said. “I was at my desk and just put my hands on my face and cried because I felt so terrible for the family who lost their child to give my child life again.”
Aliscia was about 20 weeks pregnant when she learned something wasn’t right with Emmitt’s kidneys.
Doctors determined after birth that he had developed chronic kidney disease as a result of an abnormality of the urethra (the passageway between the bladder and outside of the body). Just 20 percent of one of his kidneys functioned.
For 18 months, Emmitt’s loved ones did everything they could to keep his kidney functioning — from medication to fluids to diets. After the kidney failed, Emmitt began dialysis treatments and was listed for a transplant on Oct. 12, 2015.
His family waited 43 days for his new kidney.
In one 24-hour time period, Children’s Hospital of Wisconsin transplant teams completed one heart, two liver and two kidney transplants. To put that into perspective, the hospital typically completes 20 to 30 organ transplants a year.
“It is exceedingly rare to have matches for five patients under our care,” said Thomas Miller, vice president of surgical and diagnostic services. “Having all the matches here at Children’s Hospital of Wisconsin reflects the volume of critically ill patients we care for every year.”
Decisions on who receives an organ are made by the United Network for Organ Sharing computer system, which is based on a national priority waiting list for each organ type. The organ allocation prioritization for heart and liver are based on the medical urgency of the patient, while the prioritization for kidney is generally based on the patient’s waiting time.
What is also extraordinary is that two children in need of livers were saved from a single organ donor. Known as in-situ splitting of the liver, the technique and expertise is only available at a handful of transplant programs in the country, according to Dr. Johnny Hong, director of the solid organ transplant and pediatric liver transplant programs at Children’s Hospital of Wisconsin and professor of surgery at the Medical College of Wisconsin.
“Among the 7,000 liver transplants per year in the U.S., less than 1 percent are split liver transplantation,” Hong said. “Our team is one of a few in the country – and the first in Wisconsin — to perform an in-situ splitting of a deceased child’s liver and successfully transplanted to two children, saving two lives from a single donated liver.”
Now, nearly two years after the transplant, Auden, Sara, Sasha and Emmitt are doing great.
Auden, now 6, is a “whole different kid.” He jumps on trampolines, rides bicycles and wrestles with his brothers – all things he couldn’t do prior to transplant.
“Auden is so appreciative of life,” Kerri said. “When we ask him, ‘How do you feel with your new liver?’ he always says ‘amazing.’ He truly takes every day and lives it to the fullest.”
Kerri remains forever grateful to the donor family. In fact, she thinks about them every time she gives Auden his anti-rejection medication.
“It makes me more faithful and diligent because I never want anything to happen to that part of their child,” Kerri said. “I’m doing my part to make sure their child lives on through my son. I can never thank them enough for the chance given to our son.”
Sara, meanwhile, is a happy, healthy 3-year-old. If not for the transplant, Jean doesn’t believe she would have made it to 2 years.
“She has a liver to take care of, but she’s here and breathing and thriving and wonderful,” Jean said. “I can’t put into words how badly I feel that (the donor family) lost their child, but I think them allowing their child to go on and save other people is the most beautiful and courageous thing in the world.”
Sasha is a 12-year-old who plays the flute and volleyball and writes for the school newspaper. She loves trying new sports and swimming and eating chocolate again.
“The opportunities are endless for her, and she loves to dream about her future,” Elizabeth said. “As long as she continues making healthy choices in her life and keeping up on her responsibilities, her kidney will be healthy and functioning for the full number of years that it can provide.”
Elizabeth calls the donor family “heroes” for giving Sasha a better quality of life.
“Words cannot fully express how truly thankful we feel to the donor family who made the decision to help others in their time of grief,” she said. “We would like to thank them for giving the ‘gift of life’ to my daughter and the others that their child saved that day.”
As for Emmitt, he ate a Thanksgiving dinner just three days after his transplant. Before he couldn’t even eat applesauce due to difficulties swallowing.
Today, the thriving 4-year-old is doing everything a kid his age should be doing.
“It’s such a blessing to see him play and have fun with kids and not run out of energy,” Aliscia said. “It wasn’t until I had Emmitt that my eyes were opened to how important organ transplants are and how one person can save so many lives and give little children the opportunity for life again. No thank you can express the gratitude we have.”
Tyler, sadly, did not survive. He passed away two weeks after the transplant due to complications.
“Every day is hard,” Becky said. “He was our only boy. But what do you do? He had the best of the best. He got a good heart, and his surgeon, Dr. Woods, was the best.”
The family is carrying on by raising awareness of pediatric organ donation through an organization called Ireland’s Hope and by taking pride in knowing the positive impact her son had on others.
The Schnackys want Tyler to be remembered as a strong, caring young man who always had the best attitude.
Despite the outcome, Becky is eternally grateful to Inica whom she got the chance to meet earlier this year.
“I gave her a big hug,” she said. “We both lost our sons, but I thanked her because no matter what Tyler needed a heart. It was his body that gave out, but her son’s heart gave him a chance. My son passed away with her son’s heart. We’re bonded for life.”
The daughter of a pediatric nurse, Becky said she has always been a strong advocate for organ donation, but Tyler’s experience taught her how crucial it is for parents to talk about organ donation when it comes to their children.
“We all check the box on our driver’s license to become organ donors, but we don’t talk about our children. If God forbid, an accident happened, what would you do? I just want parents to have the talk.”
Performing five transplants in one day at Children’s Hospital of Wisconsin will always be remembered as a labor of love by those involved.
In all, more than 200 doctors, nurses and staff from all over the hospital came together to schedule operating rooms, procure necessary supplies, and prepare the children and families for the surgeries they had all been hoping, dreaming and praying for.
“Our employees wore it like a badge of honor that they were part of something so rare,” Miller said. “The fact that Children’s Hospital of Wisconsin not only had the expertise to care for these kids waiting for organs, but also to successfully complete the transplants in a single day is a testament to the dedication, compassion and expertise of our doctors, nurses and staff that together form a world-class pediatric transplant center.”