The Story of the Jesse Cause Foundation
(Note: This is an excerpt from Patricia Norquist's article in the Ventura County Reporter, December 2, 1999. The complete article is also available on our site.)
Like too many people across this nation, Chris and Shelene Keith had never heard of Group B strep - until it almost killed their infant son and put him through two life-threatening brain surgeries. Now they passionately pour their energies into warning other parents about the vital information their obstetricians may never tell them.
Group B streptococcus is designated as the number one killer of newborns in the United States by the Centers for Disease Control and Prevention (CDC)a distinction that no one disputes. So how, on the brink of the 21st century, is it possible for Shelene Keith or any other woman to sit in her obstetricians office and not hear anything about it?
Perhaps more staggering is the fact that there is a $20 test that can often detect the presence of Group B strep, and a treatment of common intravenous antibiotics that can often prevent its ravaging results.
Chris and Shelene Keith were angry when they discovered this. So are thousands of parents nationwide whose babies have been left blind, deaf, retarded or stricken with cerebral palsy. And so are the hundreds of parents whose babies never made it home at all.
Some were tested, but not treated. Some were treated improperly or not all. But even though one-third of all pregnant women carry this bacteria, few were told about the serious dangers of Group B strep.
Chris Keith is a Ventura-based recording artist who toured for 20 years singing and writing folk rock. In 1995 he made the decision to dedicate his song writing and performing to Christian music, developing a full music ministry with his family.
Wife Shelene books their concerts, promotes his CDs and joins him onstage as a sign language performance artist. Daughter Tayler, now nine years old, also sings.
The Keith family prayed for their ministry to have a specific purpose, a cause, but didnt know what it would be until Jesse David was born on July 17, 1997.
Pronounced healthy and perfect, Jesse was released from the hospital 36 hours after he emerged into the world. Five hours later, his parents rushed him to the nearest hospital, where he was diagnosed with sepsis (infected blood) and spinal meningitis (brain infection), both caused by Group B strep.
We now know that Jesse had symptoms of GBS right from the beginning, said Chris.
Its easy for new parents and untrained medical professionals to rationalize the symptoms for early-onset GBS as normal infant behavior. Jesses first symptom was an unusually high-pitched cry. His hands and feet were cold and his skin tone was blotchyalmost purple-red. And then there was the grunting, followed by the baby going stiff and then relaxing. It turned out that this was symptomatic of baby seizures. Jesse also cried inconsolably and refused to nurse, though he finally slept.
When Shelene checked on him around 10 p.m., he had turned white, was breathing funny and had a fever of 102.5. Had they given him Tylenol, their doctor later said, it would have killed him because his intestines were shutting down. The Keiths rushed him to the nearest emergency room.
Before long, Jesse was lying in the neonatal intensive care unit, hooked up to a breathing machine with tubes coming out of him everywhere, recalled Shelene. He was getting everything from a spinal tap to a blood transfusion. Chris and I prayed for Jesse to be protected and for God to show us the miracles that could come out of this tragedy.
It was three days before they knew Jesse was going to live.
After 17 grueling days in the NICU, Jesse went home again. Shelene remembers waking up countless times with her body straddled across Jesses crib, having fallen asleep while monitoring his breathing.
One month later, Jesse began projectile vomiting. A CAT scan revealed hydrocephalusexcess fluid in the braina side effect of meningitis. He was rushed to surgery, where a 3-inch shunt was placed in his brain to drain the fluids through a permanent tube down his neck to his stomach, where the tube uncoils as he grows. Seven months later, the Keiths had to hand their baby back to the neurosurgeon for a second brain surgery because the shunt malfunctioned and had to be replaced with a larger one.
Blonde and dimpled, Jesse today is an energetic and healthy 2 year old discovering words. But his barely survived first year has taken many tollssome financial, because the family wasnt able to work during much of that time, and some emotional.
When we found out this might have been preventable, we were furious. We decided this was our cause, Chris said, and we werent going to stop until everyone knew about Group B strep.
Shelene added, My OB never tested me or even mentioned that Group B strep existed. Our prayers have been answered with Jesses health and with The Jesse Cause, and now we want to make sure other parents dont go through what we did.
The Jesse Cause Foundation
After Jesses birth, when the Keith family music ministry performed throughout Ventura County, they also told Jesses story, passed out pamphlets with GBS details, and urged all pregnant women to be tested.
Local Christian radio station KDAR offered support by airing more than 15 Jesse Cause interviews as well as playing songs from To The Cross, Chris CD. Oxnards Babies R Us store gave them a table at their health fairs and arranged for the Jesse Cause pamphlets to be carried in their store information centers statewide.
Before too long, wherever the Keiths performed, people in the audience began to come up to them with their own GBS horror stories or with thanks because The Jesse Cause had led them to be tested and treated.
Greg Totten, Ventura County chief assistant district attorney, came forward as a volunteer to help the Keiths draft a legislative proposal to mandate screening for GBS as part of regular prenatal care. Local grant writers volunteered to help The Jesse Cause Foundation find full funding to realize its goal to distribute 29 million pamphlets in several languages every quarter to 145,000 maternity-related facilities.
Shelene tried to influence doctors to understand the importance of universal screening. Early on, I was invited to join a GBS panel at a family care physicians conference. I was facing about 70 doctors and telling them what happened with Jesse and how simple it was to change and they all looked through me. I clearly did not make an impact.
For The Jesse Cause, that was a turning point. From then on I knew we had to have a different strategy, she said. We had to make testing for GBS trendy with mothers nationwide and then the doctors would follow.
To accomplish that, The Jesse Cause is recruiting celebrities to make public service announcements that will air nationally next month. The Jesse Cause is also working to nail down July 1, 2000 as National Group B Strep Awareness Day.
We know were making a difference in Ventura County, said Chris. Soon, well make a difference across the nation. Its our goal to get our pamphlets nationwide by mid-2000 and then worldwide. We want to make Group B strep so public that no one in their right mind wouldnt test for it.