Da’Quan Nichols-Cox: A Day to Remember Donor

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 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 – Da’Quan’s organs were determined to be a match with five patients at the same 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.

Nov. 23, 5 p.m.

Auden’s family learned of his health problems at a routine wellness check.

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 the 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.

Auden’s illness made his stomach retain a large amount of 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.

Nov. 23, 6 p.m.

Tyler was diagnosed with hypoplastic left heart syndrome, a condition that occurs in up to four out of every 10,000 live births.

The Schnacky family was at home in Burnsville, Minnesota, when they learned of a potential heart for 15-year-old Tyler.

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 Wisconsin, where he was listed for a transplant on Oct. 7, 2015. His family waited 48 days for his new heart.

Nov. 23, 7:30 p.m.

Sara was a healthy baby until her pediatrician detected an enlarged spleen at her nine-month wellness check.

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 stays in the hospital and a terrifying allergic reaction.

At 1 year old, Sara was the youngest of the five children to receive an organ transplant on Nov. 24, 2015.

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 cannot is very humbling and heartbreaking.” Sara’s family waited 210 days for her new liver.

Nov. 24, 9:30 a.m.

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.

Despite her health problems, Sasha’s family made sure to have fun when they could.

“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 shown 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. 

Nov. 24, 9:45 a.m.

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.

While waiting for his transplant, Emmitt had low energy and no appetite.

“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.

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 are only available at a handful of transplant programs in the country.

Forever grateful

Auden, who turns 7 in December, has grown tremendously the last two years.

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.

 

Mom Jean describes Sara, now 3, as very outgoing.

“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.

Sasha is a thriving seventh-grader who publishes stories online, goes to summer camp and is a National Junior Honor Society member.

Mom Aliscia was amazed to see Emmitt eating a Thanksgiving meal just three days post-transplant.

“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.”

 

Emmitt, now 4, likes swimming, going to the park and eating ice cream.

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.”

 

 A child’s legacy

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 was the best.”

Becky Schnacky touches Tyler’s chest for the first time after the heart transplant.

Tyler Schnacky always reassured his parents not to worry. He’d tell his parents, “Don’t worry. I got this; God’s got this. No matter what I’m good.” The Schnacky’s 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.”

 

A day to remember

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.