7:27 AM CDT Mar 31, 2014
Baby Lawrence’s face lights up at a simple game of peek-a-boo. The rest of the time, his eyes never leave his mother.
“His favorite things are making noise and all of his nurses,” Shalina Bolden told KETV’s Brandi Petersen. “He loves his nurses to death.”
Lawrence knows those nurses well. He’s been in a hospital bed at Children’s Hospital and Medical Center since November, and in and out of the hospital his entire life. Lawrence is only 11 months old.
“Lawrence has what’s called complete DiGeorge Syndrome. He’s the first child in Nebraska to even have Di’George completely,” said Bolden. “He has the heart defect, he has lung issues, that’s why he’s hooked up to the trach and he has immune deficiency. He has no immune system.”
In order for KETV to even visit Lawrence, both Petersen and photojournalist Dave Hynek had to wear gowns, gloves and masks, and sanitize all video equipment. A simple infection like the common cold could make Lawrence critically ill or even kill him.
Doctors initially told Bolden her son might have two years. His medical team has advised Bolden the best course of treatment is a thymus transplant at Duke University. The thymus gland teaches T-cells how to battle infections.
Dr. Louise Markert is the only surgeon in the country doing the procedure.
“We have done 68 children with DiGeorge who are similar to Lawrence and the survival rate is 74,” Markert said.
Dr. Markert told KETV Duke is diligently working to get the thymus transplant federally approved, but as of right now, it is not. Bolden was notified in both January and March that the Nebraska Department of Health and Human Services would not cover the transplant.
DHHS officials cannot discuss specific cases, but provided KETV with a statement reading in part: “The Centers for Medicare and Medicaid Services (CMS) certifies hospitals for specific transplants. If all requirements are not met, DHHS has no authority to expend Medicaid dollars and Medicaid is required by law to deny a request for coverage of the transplant.”
“He’s fought hard for his life,” said Bolden, through tears. “He’s been through two heart surgeries, he has a trach, he’s had three feeding tube placements and every time he’s come out of it strong. I just want Lawrence to have a chance at life; to understand what it’s like to note be in a hospital bed.”
This isn’t the first time Dr. Markert has heard of a child being denied Medicaid coverage for the thymus transplant.
“So many states across the country have made an exception to that, that rule that all procedures must be approved,” said Markert. “And it’s been so gratifying helping these children across the country.”
The same day KETV interviewed Dr. Markert, Shalina Bolden received a letter from the Nebraska Department of Health and Human Services. Bolden learned the state set aside earlier coverage denials, and that advocates with Children’s Duke and the state of Nebraska are working together to demonstrate the effectiveness of a transplant. A new review by Medicaid will focus on clinical information, and transplant coverage is still under consideration.
“I did call the mother,” said Dr. Markert. “I told her I was in there with her to try and help.”
Lawrence turns one year old April 16th. He won’t get a birthday party because he can’t be exposed to germs. Maybe next year.
“Lawrence is still fighting, so I’m still fighting for him,” said Bolden. “Give Baby Lawrence a chance at life.”
Shalina Bolden works full time at Maple Crest Care Center and has two other children. She says she and Lawrence’s big sisters visit him at the hospital every night.
Loved ones and friends have organized a spaghetti feed fundraiser to help Shalina Bolden with expenses. It will take place April 13th and Elks Lodge at 24th and Lake at 1pm.
The family has also established a Go Fund Me account online at http://www.gofundme.com/baby-la.
To learn more about thymus transplantation and Dr. Louise Markert, visit the Duke Medicine website at http://corporate.dukemedicine.org/news_and_publications/news_office/news/10054 or the US National Institutes of Health Clinical Trials website at http://clinicaltrials.gov/show/NCT01220531.