Yukon parents credit umbilical cord blood infusion
August 29th 2011 04:54
“Oh, look at her brain. She's got to be brilliant,” she said, noting the enlarged brain in the cloudy image.
Hendrix' husband, Jeff, and stepson, Jordan, had joined her for a checkup to find out the sex of the baby. Hendrix joked that this visit would be her last with her obstetrician specializing in high-risk deliveries.
“I'm sorry, no. You'll be seeing a lot more of me,” the doctor said.
Their world caved in with the doctor's somber explanation.
“Your daughter has hydrocephalus,” he said.
Amy Hendrix sobbed.
The baby's head was large because fluid had filled her brain.
The family from Yukon soon decided to take unusual measures for the baby that the doctor warned would resemble a “space alien,” with a small body and enlarged head — a child who would forever be an infant mentally.
Since their godson has hydrocephalus, the couple knew that the condition can lead to profound disability and, if untreated, even death.
The typical treatment involves surgically inserting a shunt or flexible tube to regulate and reroute excessive cerebrospinal fluid to where it can be readily absorbed.
But Amy Hendrix began researching congenital hydrocephalus and found additional hope.
She found a North Carolina mom's website that discussed promising results when Dr. Joanne Kurtzberg at Duke University in 2006 infused her child, who had hydrocephalus, with the child's own blood saved from the umbilical cord. The blood contains stem cells, which can grow into different kinds of cells to be used to treat diseases.
Cord Blood Registry
Though only a handful of children with hydrocephalus had received the therapy at Duke, the Oklahoma family contacted Cord Blood Registry to receive a kit so a doctor could preserve the baby's cord blood and send it to the storage facility in Tucson, Ariz.
“Ninety-five percent of the time, cord blood is thrown away as medical waste,” said Kathy Engle, spokeswoman for Cord Blood Registry, which has more than 375,000 samples frozen and stored. The cost is about $2,000 for the first year with a $125 yearly fee. Parents also sometimes choose free storage in public cord blood banks, though the donated blood can be used by whoever needs it.
The Oklahoma family ultimately arranged to have Kurtzberg infuse their baby, Parker, with the baby's perfect genetic match: her own cord blood.
Meanwhile, baby Parker's head was rapidly growing as she lay inside her mother. In desperation, the couple decided with one of their doctors, Dr. Chuck Mirabile, to deliver the baby early so a shunt could be implanted to relieve the pressure caused by the fluid.
“There was so much brain damage that we don't know how much of her brain is going to atrophy and how much will bounce back,” Hendrix said.
Parker was delivered two months prematurely. Her head was the size of a toddler's.
“The fluid buildup was so great, it compressed her brain into a fine sliver,” Hendrix said.
The baby had underdeveloped optic nerves and shaking of the eyes that indicated she'd probably have extremely poor eyesight or be blind. She also developed a brain bleed at birth and had to spend a month in the newborn intensive care unit.
Though Parker still had to be fed by a tube, the family decided in September 2008 that was best to get her to Duke in North Carolina for the infusion with Parker's saved cord blood. As they considered how soon to leave, Hendrix said a doctor warned them of the seriousness of their baby's condition.
“I had prepared myself for a child that would never pass infancy,” Hendrix said. “But we had hope.”
After the first treatment, Parker began showing signs of improvement. A nurse, physical therapist and education therapist worked with Parker through the state's SoonerStart program for children with disabilities and developmental delays.
“We just hoped stem cells would reprogram and remap her brain,” Hendrix said.
Soon, the baby could hold up her head. She began to sit up and track movements with her eyes.
Her progress was so encouraging, the family had another infusion done at 11 months.
Research continues
There's too little data to support the theory that stem cells from cord blood will benefit genetic and medical conditions, said Mirabile, maternal fetal medicine specialist with The Perinatal Center of Oklahoma, who collected the cord blood for the family. Much depends on how rapidly hydrocephalus progresses, and whether there are other abnormalities or disorders, he said.
“If you look at the imaging studies ... it looks like a child that should not be doing well, but when you see how she is clinically doing, she is doing phenomenal,” Mirabile said. “That's great. We just don't know: Did the cord blood make the difference or not make the difference?”
The American Cancer Society lists possible drawbacks to saving cord blood: A single cord blood unit wouldn't have enough stem cells for most adults, so the cord blood use would probably be limited to childhood or early adolescence; the cord blood could be wasted because there's little chance the average child or close relative will be helped by storing a person's cord blood; and the shelf life is unknown
The cord blood has the same genetics as the child from whom it is saved. So, if someone develops leukemia, for example, the cord blood will contain cells with those genetics and wouldn't help the person if the disease develops.
Parents can opt, though, to get cord blood from someone else donated through one of the public cord blood banks, though none are available in Oklahoma.
Hendrix said she and her husband hope parents who receive a diagnosis of hydrocephalus will not terminate their pregnancy. They also encourage parents to keep their child's cord blood, even if the child is expected to be normal.
Parker did so well, she was released from the SoonerStart early intervention program at 1½ years old rather than staying in it the typical three years.
Though she is on medication to control seizures, she has good vision and is hitting and exceeding her milestones.
“She's our miracle baby,” Hendrix said.
This weekend, Parker turned 3 years old. Only time will tell how she will continue to progress.
“I just want Parker to be a happy, functioning person. I want her to have a fulfilled life. If she lives with us forever — sorry to get choked up — that's what we were prepared for anyway,” she said, trying to hold back tears.
| 30 |
| Vote |
Add To: 
subscribe to this blog
