Fort Worth, Texas,
03
March
2016
|
10:44 PM
America/Chicago

A sign from heaven: Family travels across U.S. for care at Cook Children's

First baby in nation to receive experimental therapy for abnormally high levels of insulin

After helplessly watching their newborn son Brantlee Sanford poked, prodded and tested constantly over the first week of his life, parents Jake and Tella were desperate for some answers.

At last, after long days plagued with uncertainty, they found their answer on the other end of a phone call from Paul Thornton, M.D., medical director of Cook Children’s Congenital Hyperinsulinism Center and Endocrine Diabetes program.

The family found Dr. Thornton through a Google search and a story posted on checkupnewsroom.com. The article told the story of how Dr. Thornton had led thea team of experts from around the world in creating new screening for physicians to recognize and manage neonates at increased risk for a persistent hypoglycemia disorder. The fact that Dr. Thornton was establishing these guidelines proved to Jake and Tella that he would be the best person to care for their little boy.

Dr. Thornton expected Brantlee had a rare condition called hyperinsulinism. He was right.

While at Cook Children’s, Brantlee had two pancreatectomies and a Gastrostomy Button, or G-Button, installed.

“Brantlee is now the first baby in the United States to undergo this new experimental therapy for hyperinulinism and so far, it is working, allowing him to go home and keep his blood glucose in the safe range,” Dr. Thornton said.

But before they found their answers, the Sanfords were left with only questions.

Brantlee was born a month and a half prior to his due date, weighing a surprising 8 pounds, 6 ounces. He was taken immediately to a Neonatal Intensive Care Unit in Flint, Mich., leaving behind tearful parents Jake and Tella to wonder and worry about the fate of their newborn son. Over the next few days, Brantlee’s insulin levels continued to climb without any explanation.

“We found out Brantlee was having problems shortly after his birth,” Jake said. “We wondered why he was so big for a premature baby and the doctors were curious if we had our due date right.”

However, within a week of Brantlee’s birth, an endocrinologist pulled his parents aside. Noticing his furrowed brow and serious demeanor, Jake and Tella braced themselves for what they could only expect, was bad news. The doctor informed them that Brantlee’s insulin levels were in the 300s when his sugar was 30mg/dL. Typically, a healthy newborn’s insulin level should be less than 2 with low glucose levels.

“In the 32 years he’d practiced, he said he’d never seen a baby at these levels,” Jake said. The doctors initially informed Jake and Tella that their son had a rare form of hypoglycemia, which is when the blood glucose drops below 50 milligrams per deciliter. However, the doctors’ treatments for hypoglycemia were not working on Brantlee. While Jake and Tella continued to rely on each other, both were growing weary and exhausted, continually praying for healing.

“It was a nightmare for us. We were slowly realizing that Brantlee wasn’t a typical premature baby,” Jake said.

After a week of tests and no answers, the doctors recommended Brantlee be sent to a children’s hospital in Detroit. Jake, not about to be away from his son, decided to use all of his vacation days to travel to Detroit with Tella. After extensive tests by multiple doctors, Jake said no one could figure out what was wrong with his baby. It seemed that Jake, Tella and Brantlee had hit another dead end.

But then everything changed.

“My sister had sent me a newsletter from a children’s hospital in Texas called Cook Children’s. I emailed the writer of this article on congenital hyperinsulinism while waiting for a miracle to happen,” Jake said.

Two days later, Jake received a phone call from a Texas area code. Dr. Thornton was on the other line, asking Jake if he and Tella would be willing to bring their newborn son to Fort Worth. “We figured if a doctor took the time to call us, he wanted to care for us,” Jake said.

After hearing from Dr. Thornton, Jake acted on impulse, desperately hoping that this was the moment that could save Brantlee’s life. Two days later, Tella and Brantlee were on a plane headed to Texas.

“They were amazed I called back so fast and how quickly we were able to arrange transport to get them here,” Dr. Thornton said.

After arriving at Cook Children’s and meeting Dr. Thornton, Brantlee was officially diagnosed with hyperinsulinism. This condition causes abnormally high levels of insulin, which can increase the risk for dangerous complications to the brain. However, fortunately for the Sanford family, Cook Children’s is one of only two hospitals in the United States with hyperinsulinism centers.

“It was really great to know that they were able to find us on the web, make contact, and get here fast so we could treat their baby,” Dr. Thornton said. Dr. Thornton is one of the most recognized hyperinsulinism specialists in the world, which made Jake and Tella feel more comfortable placing their son in his care.

“Dr. Thornton’s call was truly a sign from heaven. We put our faith to the wind and it took us to Texas,” Jake said.

After two and a half months, Brantlee was allowed to return home, just in time for the holidays.

“Since being back, we have tried our best to be a normal family, between the octreotide injections, blood sugar checks, continuous feedings from 9 p.m. to 9 a.m., and sirolimus into the G-Button.” To most, this sounds like a nightmare of foreign terminology. However, for the Sanford family, this circumstance is now a blessing.

Today, Jake and Tella can now manageably raise him from a home instead of a hospital.

“The threat of his sugars going low is still a battle for us, but thanks to Cook Children’s and his medication, we are able to raise it to where it needs to be,” Jake said.

Brantlee will return to Cook Children’s in June for a follow up appointment with Dr. Thornton.

- Article written by Elizabeth Sparks

More about Cook Children's Hyperinsulinism Center

One of only two such programs in the nation Cook Children's Hyperinsulinism Center uses a specialized team approach to treat this rare disease. Hyperinsulinism affects many areas of the body, so to truly treat the disease, each child is seen by top physicians, nurses, researchers and specialists in the field. These medical professionals have spent additional years of intense study and have dedicated their practice to focusing on hyperinsulinism so that your child has access to the medical care that treats all the symptoms. It is this level of treatment that has helped earn our program a distinguished international reputation for extraordinary care and achieving positive results.

Comments 1 - 2 (2)
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Elizabeth Philippou
04
March
2016
Love what you do...we live in Adelaide South Australia certainly feel very isolated here with my grandson's HI condition...we love reading about new treatments. Please keep us and our endo team at the Women's and Children's Hospital posted on any updates.Cruz is 5 years old bright happy boy his is under the supervision of Jenny Cooper. Any trips to Australia for a meet and greet with you and your HI team? Would love to hear back from you. Thank you for all the amazing work. Please keep kids internationally suffering from this condition in your thoughts too. X
Noelle Pawis
07
March
2016
My six year old son suffers from hyperinsulinism. We are going to see Dr.Thornton in Texas from Toronto,Canada in a few weeks. I can not wait to get my son to The Cook Children's Hospital! I am honored to meet Dr.Thornton and have him care for and possibly cure my son!