And It's About Time There Was Some Support For Cushing's!
http://www.selmatimesjournal.com/articles/2005/01/02/news/local/news505.txt
By John Gullion
Friday, December 31, 2004
Times-Journal Managing Editor
Everyone that knows her will say Kaitlyn Elizabeth Burbage is a miracle baby. In a way that's true because all babies are miracles, even the ones whose parents don't know it.
But what separates 8-month old Kaitlyn from the pack, aside from the beautiful, big blue eyes that light up her face when she smiles, is that she has a miracle mommy.
Kaitlyn's mommy, Kelli Burbage is living a miracle. The doctors say she shouldn't have been able to get pregnant. The doctors said if she did manage to get pregnant, her body would reject the baby. The doctor who saved her life said if the tumor that consumed her pituitary gland had lasted much longer, Kelli Burbage would be dead right now.
Burbage, who suffers from a condition known as Cushing's Disease, is a living example that sometimes-even doctors are as human as the rest of us.
"Doctors are not always the only physicians people can have," said Burbage, a Selma native. "When doctors say impossible, God says possible."
Kaitlyn's grandmother, Joyce Smith, puts it in other terms.
"She's just precious," Smith said. "She just wasn't meant to be but we have her and she's blessed."
Kaitlyn was born April 13, a healthy 8-pounds and 3-ounces, in a hospital room full of family friends and one Mississippi medical student who stayed hours after her shift with her next shift approaching fast, just so she could watch the woman without a pituitary gland give birth.
But that's the end of the story, at least for now. This isn't the story of what happened after little Kaitlyn came into this world, it's the story of how she came into this world at all.
When Kelli Burbage met her future husband Gene, she was 5-foot-7 and 118 pounds, over the next year and a half she gained 150 pounds.
"All of a sudden she put on excess weight, it really lowered her self esteem," Smith said. "She has always been an outgoing person. She just kind of withdrew. She tried to get help and tried diets and nothing helped."
Kelli knew something was wrong, however the four doctors she went to see over the next two years couldn't find it.
"Every doctor said 'you're obese and inactive, your metabolism has slowed down," Kelli said, the anger still bristling in her voice.
Though she thought differently, the doctors made Kelli doubt herself, after all she did work 9-to-5 at a desk job and then go to law school at night. Maybe it was her sedentary lifestyle.
Her mother believed the doctors as well, but she suspected there was more going on than the doctors said.
"I'd tell her to go to the doctor and she'd go and they'd chalk it up to you each too much," Smith said. "I felt like something was wrong."
It took a trip to the plastic surgeon, to get some moles removed, for Kelli to find the truth.
"He saved her life," Smith said.
The plastic surgeon, Dr. Louis Pernia, saw the skin tags under her arm, the stretch marks, found the knot at the base of her neck, noticed the hair falling out and found the hump growing in the middle of her back.
He started asking questions, which Kelli's 18-year-old sister Katie started answering.
"Have you always been big?"
"No, she was tall and thin."
"Have you been having mood swings?"
"Lord, yes."
"Have your eating habits changed?"
"No, she eats the same as she always has, even less," Katie replied.
Within 30 minutes, Kelli found herself getting a CAT scan to check for a possible cranium tumor.
Somehow she stayed outwardly calm, but "of course, I had freaked out on the inside," she said.
She had been diagnosed with Cushing's Disease.
According to the Cushing's Web site www.niddk.nih.gov/health/endo/pubs/cushings/cushings.htm, Cushing's occurs when the body's tissues are exposed to excessive levels of cortisol for long periods of time.
According to the site, Cortisol performs vital tasks in the body. It helps maintain blood pressure and cardiovascular function, reduces the immune system's inflammatory response, balances the effects of insulin in breaking down sugar for energy, and regulates the metabolism of proteins, carbohydrates, and fats. One of cortisol's most important jobs is to help the body respond to stress.
The CAT scan showed nothing, but after two more MRI's they found a tumor attached to her pituitary gland.
"(The tumor) going to come out or you're going to die," Kelli's neurosurgeon, Dr. Richard Morawetz, told her.
"I remember when I told my mom over the phone that the doctor had called and told me that they'd found the tumor on the MRI, she started to cry, and I said, 'Oh mom, it's just a tomah,' like Arnold Schwarzenegger in Kindergarten Cop," Kelli said. "And she said, 'I don't know how you can be laughing about this.' I said, 'Momma, what have you and Daddy always taught us? That God will not give us more than we can handle, right? And besides, I can laugh or I can cry, and crying just messes up your makeup.'"
From the MRI, the doctors couldn't see where the tumor started and stopped, Morawetz told Kelly and her family that if he couldn't find it, he'd have to take the tumor and the entire gland.
"If I take the whole thing you're going to be on hormone therapy the rest of your life and there's no way you can have children," Morawetz told her.
The pituitary gland is sometimes called the "master" gland of the endocrine system, because it controls the functions of the other endocrine glands. The pituitary gland is no larger than a pea, and is located at the base of the brain.
The Sunday before the surgery, Kelli and her husband Gene, were called to come to their church early for a special prayer session at Central Church of Christ in Tuscaloosa.
The day of the surgery came and Kelli made it through.
As Morawetz told them the good news, he also delivered the bad.
"He said 'I had to take it all,'" Burbage said. "My parents knew what that meant. He said 'We're lucky we caught it when we did, she would have been gone in a year.'"
"Our hearts dropped, but at least she was going to be living," Smith said.
Doctors removed Burbage's pituitary gland at the stalk and told Kelli that within 24 hours her hormone levels would bottom out and she would spend the rest of her life taking medications to replace them.
Her hormone levels never dropped. To this day, Kelli hasn't had to start taking the meds.
"They cannot figure out why my hormones never bottomed out," Burbage said. "Dr. Elizabeth Innis (who works with Morawetz) she said something else has to be wrong."
But the neurosurgeons checked and couldn't find anything else wrong.
"I'm the case they've been talking about," Kelli said.
Still, the doctors said Kelli would not be able to get pregnant.
"If you did get pregnant your body would not be able to handle it and you'd lose it, we had decided we would just adopt," she said. "When I got pregnant, (the doctors) really freaked out."
They weren't the only ones. Kelli's husband Gene wept. Her family couldn't believe it.
"She'd call and say the adoption agency doesn't have a baby yet and I'd say when the time's right it will happen," Smith said. "She said in April you're going to be grandparents. We thought it was the adoption. She said 'we're pregnant' and I said 'what?'"
Fast-forward about nine months and little Kaitlyn entered the world to the relief of her family and the astonishment of the medical community.
Kelli has joined a Cushing's support group online, there are only three other cases in Alabama, as far as she knows. And she is working to battle the weight, so far she has lost 46 pounds.
"I still avoid seeing old friends, going to weddings, reunions because they all remember the 118-pound me," she said. "Nobody would recognize me now."
She continues to be astounded by the love and loyalty of her husband who has stuck by her side.
"He has been my rock. He has held my hand and been there with me and prayed with me through all of this," she said. "I couldn't have done it without him."
Though they still hope to adopt, the Burbage's little family is content to watch Kaitlyn as she grows into a young lady.
"I feel like she knows things that we don't know," Kelli said. "One of the men at church told me 'I believe babies can see angels.' I think god's missing an angel, he sent one down to me."
Kaitlyn's mommy, Kelli Burbage is living a miracle. The doctors say she shouldn't have been able to get pregnant. The doctors said if she did manage to get pregnant, her body would reject the baby. The doctor who saved her life said if the tumor that consumed her pituitary gland had lasted much longer, Kelli Burbage would be dead right now.
Burbage, who suffers from a condition known as Cushing's Disease, is a living example that sometimes-even doctors are as human as the rest of us.
"Doctors are not always the only physicians people can have," said Burbage, a Selma native. "When doctors say impossible, God says possible."
Kaitlyn's grandmother, Joyce Smith, puts it in other terms.
"She's just precious," Smith said. "She just wasn't meant to be but we have her and she's blessed."
Kaitlyn was born April 13, a healthy 8-pounds and 3-ounces, in a hospital room full of family friends and one Mississippi medical student who stayed hours after her shift with her next shift approaching fast, just so she could watch the woman without a pituitary gland give birth.
But that's the end of the story, at least for now. This isn't the story of what happened after little Kaitlyn came into this world, it's the story of how she came into this world at all.
When Kelli Burbage met her future husband Gene, she was 5-foot-7 and 118 pounds, over the next year and a half she gained 150 pounds.
"All of a sudden she put on excess weight, it really lowered her self esteem," Smith said. "She has always been an outgoing person. She just kind of withdrew. She tried to get help and tried diets and nothing helped."
Kelli knew something was wrong, however, the four doctors she went to see over the next two years couldn't find it.
"Every doctor said 'you're obese and inactive, your metabolism has slowed down," Kelli said, the anger still bristling in her voice.
Though she thought differently, the doctors made Kelli doubt herself, after all she did work 9-to-5 at a desk job and then go to law school at night. Maybe it was her sedentary lifestyle.
Her mother believed the doctors as well, but she suspected there was more going on than the doctors said.
"I'd tell her to go to the doctor and she'd go and they'd chalk it up to you each too much," Smith said. "I felt like something was wrong."
It took a trip to the plastic surgeon, to get some moles removed, for Kelli to find the truth.
"He saved her life," Smith said.
The plastic surgeon, Dr. Louis Pernia, saw the skin tags under her arm, the stretch marks, found the knot at the base of her neck, noticed the hair falling out and found the hump growing in the middle of her back.
He started asking questions, which Kelli's 18-year-old sister Katie started answering.
"Have you always been big?"
"No, she was tall and thin."
"Have you been having mood swings?"
"Lord, yes."
"Have your eating habits changed?"
"No, she eats the same as she always has, even less," Katie replied.
Within 30 minutes, Kelli found herself getting a CAT scan to check for a possible cranium tumor.
Somehow she stayed outwardly calm, but "of course, I had freaked out on the inside," she said.
She had been diagnosed with Cushing's Disease.
According to the Cushing's Web site www.niddk.nih.gov/health/endo/pubs/cushings/cushings.htm, Cushing's occurs when the body's tissues are exposed to excessive levels of cortisol for long periods of time.
According to the site, Cortisol performs vital tasks in the body. It helps maintain blood pressure and cardiovascular function, reduces the immune system's inflammatory response, balances the effects of insulin in breaking down sugar for energy, and regulates the metabolism of proteins, carbohydrates, and fats. One of cortisol's most important jobs is to help the body respond to stress.
The CAT scan showed nothing, but after two more MRI's they found a tumor attached to her pituitary gland.
"(The tumor's) going to come out or you're going to die," Kelli's neurosurgeon, Dr. Richard Morawetz, told her.
"I remember when I told my mom over the phone that the doctor had called and told me that they'd found the tumor on the MRI, she started to cry, and I said, 'Oh mom, it's just a 'tomah,' like Arnold Schwarzenegger in Kindergarten Cop," Kelli said. "And she said, 'I don't know how you can be laughing about this.' I said, 'Momma, what have you and Daddy always taught us? That God will not give us more than we can handle, right? And besides, I can laugh or I can cry, and crying just messes up your makeup.'"
From the MRI, the doctors couldn't see where the tumor started and stopped, Morawetz told Kelly and her family that if he couldn't find it, he'd have to take the tumor and the entire gland.
"If I take the whole thing you're going to be on hormone therapy the rest of your life and there's no way you can have children," Morawetz told her.
The pituitary gland is sometimes called the "master" gland of the endocrine system, because it controls the functions of the other endocrine glands. The pituitary gland is no larger than a pea, and is located at the base of the brain.
The Sunday before the surgery, Kelli and her husband Gene, were called to come to their church early for a special prayer session at Central Church of Christ in Tuscaloosa.
The day of the surgery came and Kelli made it through.
As Morawetz told them the good news, he also delivered the bad.
"He said 'I had to take it all,'" Burbage said. "My parents knew what that meant. He said 'We're lucky we caught it when we did, she would have been gone in a year.'"
"Our hearts dropped, but at least she was going to be living," Smith said.
Doctors removed Burbage's pituitary gland at the stalk and told Kelli that within 24 hours her hormone levels would bottom out and she would spend the rest of her life taking medications to replace them.
Her hormone levels never dropped. To this day, Kelli hasn't had to start taking the meds.
"They cannot figure out why my hormones never bottomed out," Burbage said. "Dr. Elizabeth Innis (who works with Morawetz) she said something else has to be wrong."
But the neurosurgeons checked and couldn't find anything else wrong.
"I'm the case they've been talking about," Kelli said.
Still, the doctors said Kelli would not be able to get pregnant.
"If you did get pregnant your body would not be able to handle it and you'd lose it, we had decided we would just adopt," she said. "When I got pregnant, (the doctors) really freaked out."
They weren't the only ones. Kelli's husband Gene wept. Her family couldn't believe it.
"She'd call and say the adoption agency doesn't have a baby yet and I'd say when the time's right it will happen," Smith said. "She said in April you're going to be grandparents. We thought it was the adoption. She said 'we're pregnant' and I said 'what?'"
Fast-forward about nine months and little Kaitlyn entered the world to the relief of her family and the astonishment of the medical community.
Kelli has joined a Cushing's support group online, there are only three other cases in Alabama, as far as she knows. And she is working to battle the weight, so far she has lost 46 pounds.
"I still avoid seeing old friends, going to weddings, reunions because they all remember the 118-pound me," she said. "Nobody would recognize me now."
She continues to be astounded by the love and loyalty of her husband who has stuck by her side.
"He has been my rock. He has held my hand and been there with me and prayed with me through all of this," she said. "I couldn't have done it without him."
Though they still hope to adopt, the Burbage's little family is content to watch Kaitlyn as she grows into a young lady.
"I feel like she knows things that we don't know," Kelli said. "One of the men at church told me 'I believe babies can see angels.' I think god's missing an angel, he sent one down to me."
