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Organ donation gives mother irreplaceable moments and memories with her baby

A mother wishes to transform her grief into hope for others during April's Donate Life Month, a national observance highlighting the importance of organ, eye and tissue donation.

Although Savannah Bryer-Campbell's third child, Hunter, did not live to see his first birthday, a generous organ donor allowed her to spend precious time with her son.

During his brief life, Hunter endured lengthy hospital stays in two states, marathon surgeries and serious infections. Through it all, his mother never left his side, and she discovered an inner strength to persevere and advocate for her son's health.

About eight weeks after she gave birth to Hunter he was diagnosed with biliary atresia, a rare condition in infants that leads to loss of liver tissue and function, and cirrhosis.

Campbell, a Chickasaw citizen, first sought urgent medical attention in Stillwater, Oklahoma, when 6-week-old Hunter stopped taking bottles and appeared jaundiced.

"I took him to the doctor; he was extremely yellow. I thought he was just a little jaundiced, but it was getting worse and worse," said Campbell, who lived in Ponca City, Oklahoma, at the time. The doctor ordered blood work and in the time it took the family to travel the 50 miles to home, the doctor's office called and said the baby must be admitted to the hospital.

Hunter was flown to Tulsa (Oklahoma) Children's Hospital where scans, tests and blood work revealed he may be suffering from biliary atresia, a rare condition in which the bile ducts surrounding the liver are scarred and blocked. Bile can't flow into the intestine and builds up in the liver, causing damage. The disease occurs in one out of every 12,000 infants in the United States, according to the National Institute of Health.

On June 23, Hunter was airlifted to the University of Oklahoma (OU) Children's Hospital in Oklahoma City, which has a biliary atresia specialist. A few days later a liver biopsy confirmed the diagnoses, and Hunter underwent a Kasai surgery, which is a corrective procedure.

"He started to get a little bit better after that procedure. We spent two months in the hospital trying to get him better to go home," Campbell said. "We spent his first Fourth of July in the hospital watching the fireworks out of the windows together."

Eventually, Hunter was well enough to go home, but just three days later he was admitted to the hospital due to complications.

It was determined the Kasai surgery did not work, and Hunter's liver was not functioning. He was referred to Texas Children's Hospital, Houston, to be evaluated for a liver transplant.

The day after his October release from the hospital, Campbell, her mother and Hunter went to the store. During the trip Hunter was crying and was not consolable.

"He was just screaming nonstop. We couldn't get him calmed down. We were trying to push food through his NG (nasogastric) tube to get him to calm down and it just wasn't working, so we went home. We were walking upstairs to my mom's apartment when he stopped crying.

My mom looked down in his car seat and noticed he was not breathing," she said.

Campbell called 911 and the operator instructed her how to administer CPR.

By the time the paramedics arrived, Hunter started breathing and crying again, but his cry was very weak.

Mom and baby were flown from the Ponca City hospital to Children's Hospital in Oklahoma City where medical staff determined an infection in his central IV line is what caused Hunter to stop breathing.

Hunter was then flown from Oklahoma City to the Houston hospital Nov. 19 to get active on the transplant list. The plan was to have the baby home by Thanksgiving.

Days passed and as much as Campbell wanted to be home with all three of her children for Thanksgiving, little Hunter was gravely ill fighting the infection in the Pediatric Intensive Care Unit (PICU). His liver and kidneys were failing.

Still in Houston Dec. 10, Campbell received a call from Hunter's doctor stating he would be listed as 1-B transplant status, which is reserved for very sick, chronically ill patients younger than 18. Medical staff cautioned Campbell that her son may not live long enough for a liver transplant, even though he was placed at the top of the transplant list. But, just 12 hours after moving to the top of the transplant list, a liver was available.

"We said our goodbyes, just in case, and he went into the operating room at 5 a.m., Dec. 13." Hunter's surgery lasted until 6 p.m., but he started bleeding from his incision before leaving the operating room. Finally, the bleeding was controlled, and Campbell was able to see her son at 2 a.m., Dec. 14.

"He spent almost 24 hours in the operating room," she said. "When I got to see him, he was intubated. It was so scary to see a little baby like that. I didn't sleep for the next three days." Hunter started to get his normal color as the days passed and everything was looking amazing, Campbell explained.

But two weeks later, Hunter was in the hospital's PICU fighting an infection from the transplant. "He had one of the worst infections possible that you could get after a transplant," she said.

Medication and steroids administered to fight the infection made his little body appear much bigger.

"He went from just a little bitty baby that looked like a newborn to (looking like) a 4-year-old. He looked like a football player, so we thought we had it under control."

The months that followed included additional surgeries, blood transplants and continual praying that the little boy would heal. Campbell was with Hunter every step of the way, keeping a bedside vigil and serving as an advocate for her baby.

In February 2023, shortly after the news came that another transplant was not possible due to the infection, Hunter took a turn for the worse.

"He went septic completely. He quit breathing, and his heartbeat dropped, it was only a couple beats a minute, and they were pushing as much blood as possible."

Doctors asked if Campbell wanted to sign a do-not-resuscitate (DNR) order. She made the excruciating decision to sign the papers and then Hunter began to get better.

"He was waking up on his own, numbers like his blood work were dropping, and he was looking a little bit better. He wasn't as pale," she said. "He was able to sit up. He was babbling a little bit whenever we were doing his breathing treatments. It was so amazing to be able to hear his little sounds again because it had been so long," she said.

A tracheostomy was performed so Hunter could breathe easier. After the surgery, Campbell saw her baby boy without a mask or tape on his face for the first time in months.

"He was so beautiful, just to see his face, it had been so long because he had tape all over, I couldn't see it."

One early morning, Campbell awoke to medical staff urgently trying to repair the trach and was soon told Hunter's blood work indicated the infection had gotten worse.

"I was like 'OK, so what do we do,'" she said.

Doctors later informed her they identified a new medication that may be able to rid Hunter's body of the infection.

It was also confirmed that Hunter was in liver and kidney failure.

Time passed, and by the second week of March, Hunter's condition was touch and go.

Campbell decided to go ahead and celebrate her baby boy's birthday.

"We bought him a big 'tow mater' truck cupcake and we sang happy birthday for him."

After the celebration, Campbell's resolve changed to acceptance.

"I just looked at my husband and was like, 'This is it; we did everything possible."'

A one-on-one visit with the physician confirmed Campbell's intuition.

The doctor asked if she wanted to keep going day by day pushing as much medicine as possible or if she wanted to let her baby go.

"Me and my husband talked for hours trying to figure it out."

They decided to keep administering his normal medication but not take any extraordinary measures.

The doctor asked if she was OK.

"I was nowhere near OK. I'm getting ready to lose my baby plus I was also three months pregnant, so it was even harder."

Campbell held her baby for hours until a hospital bed was placed in the room.

"I laid him down in the bed with this dinosaur ABC blanket, it was one of his favorite blankets and got him comfortable. I laid in the bed with him, and my husband sat next to the bed."

Many hours later, after watching his vitals, she decided to get up and shower.

"I got up and he grabbed my jacket."

So, she didn't move an inch from the bed.

"Probably an hour later I looked over at Hunter and he turned and looked at me. It kind of looked like he had a little grin and then he just closed his eyes, and all the machines went off like crazy. "Doctors and nurses started running in and our nurse was like 'No, go away.' All I could hear is just the world running around me, but it felt like everything was in slow motion."

Despite all the buzz around her, she continued to stay with her son, holding him.

"It felt like I only was in there for a couple of minutes."

After phone calls were made to inform family members of Hunter's passing, Campbell requested to bathe her son.

"I did his bath every night. I wanted to do his last routines for him. I bathed him and washed his hair. I put his hair up in his mohawk that he always wore. He had the longest hair, ever. I cuddled with him for a little bit longer. I said my goodbyes."

As in life, Campbell continued to care for Hunter.

"I was here from day one. I have to do the last moments. So, I got him ready. I unhooked him from everything. I gave him a kiss and laid him in the bag, put his tag on him and zipped him up. "It was the hardest thing I could have ever done, but I am so lucky that I was able to do his last moments with him and go through all that with him even though I never expected I could have. It will always be stuck with me."

Campbell said Texas Children's is the same hospital where her brother, Chance, died. She always admired her mother's unwavering support and care of her brother.

"I always thought 'I'll never have to go through that,' and then my little boy ended up having to go through it, and I was there from day one until the end of the day."

Hunter was laid to rest April 7, 2023, in Ponca City next to his uncle Chance. He was wearing his Easter outfit, a pink button-down shirt, slacks, suspenders and a bow tie. The family selected a casket with a big green dinosaur, and he was buried with his favorite stuffed gorilla.

The family, which includes husband Coltin and children Amber, Kali and Hayden, keep Hunter's memory alive through mementos, such as a handprint in plaster and a toy bunny, in the home. Campbell said she is forever grateful for the donor and the donor's family who gave her more time with Hunter.

"It gave me three and a half months extra with Hunter because somebody was willing to do that for us. I couldn't have dreamed of a little bit longer without the donor – if I didn't have somebody so willing to donate their family member's organs.

"You can save somebody's life with donation, all the way across the world. Our liver came from Louisiana. Even if it's an adult, you can help a baby and you can help another adult. Even though you're losing your family member you're also saving so many other family members for other people."

Campbell, who receives her Chickasaw lineage from her dad, the late Richard Lee Bryer, said her experience with Hunter made her stronger and strengthened her resolve to pursue an education in the medical field.

"Whenever I'm able, my plan is to go back to school and be a PICU nurse, maybe when the kids get a little bit older."

She is also grateful for the addition of newborn screenings that test bilirubin levels and help detect aliments such as biliary atresia.

For more information about organ donation, visit LifeShareOklahoma.org.

 

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