Experimental procedure changes Charlotte area girl's life

Experimental procedure changes Charlotte area girl's life

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by MICHELLE BOUDIN / NewsChannel 36 Staff

Bio | Email | Follow: @MichelleBoudin

WCNC.com

Posted on February 20, 2012 at 5:40 PM

Updated Monday, Feb 20 at 5:41 PM

CHARLOTTE, N.C. -- A routine ultrasound turned frightening for a local mom as she learned her baby would be born with a life-threatening condition.

Lindsey Musgrave remembers the day when she learned her son Vincent would soon have a sister. 

“We were elated,” Lindsey said.  “My husband wanted a girl.  I wanted a girl.  I just wanted a healthy child, though.”

That same ultrasound revealed something else.

“The doctor looked at me and he looked very concerned,” Lindsey recalled.  “He said there was something wrong with her brain.  It didn't hit me at first. I was thinking it can’t be that serious right? And then he said, ‘No it’s really serious.’”

Her baby's condition was so serious that the doctor told her to consider aborting the pregnancy.

“I asked them if she would ever be able to walk or talk, or ever be able to form relationships and the answer to those questions was, ‘I don't know.’”

Lindsey also asked if the baby would be able to lead a normal life. 

“They flat out told me no,” Lindsey said.

Marley was born with a severe case of hydrocephalus, which is excess fluid that puts dangerous pressure on the brain.

Through research her mom learned the little girl’s best hope at a normal life was an experimental procedure being done at just one hospital in the country:  Duke University Medical Center.

Newschannel 36 followed Marley there for what’s called a cord blood transfusion.

Cord blood is the baby’s blood leftover in the placenta.  Marley’s blood had been stored at Duke University Medical Center where Dr. Joanne Kurtzberg is the pioneer of this type of work.  She is studying to see if the procedure that has helped with so many other conditions could actually change the prognosis for babies born with hydrocephalus.

“We’re now testing whether using that baby’s cord blood … in their veins after birth helps repair the brain,” Kurtzberg said.

Families come to Duke from across the United States.

“We originally heard about it from another fellow mom,” Lindsey said.

While waiting for treatment, the moms at the hospital compare notes.

The Milberg's are from St. Louis and went to Duke for the same procedure.  They say 8-month-old Eli is at an age where they're hoping to see if the transfusions really work.

Elijah, 4, from Virginia seems to be a success story. He was among the first of the hydrocephalus babies to have a cord blood transfusion and is thriving. He's a symbol of hope as Marly just begins the process.

NewsChannel 36 was there as Marly's blood was readied. Grandpa and big brother Vincent watched over her along with a team of doctors and nurses as they prepared for the procedure.

A music therapist was also there to distract the toddler from what was to come.

A few minutes later it was over and the real waiting began.  Will the cord blood heal Marley's brain?

“This is hope,” Lindsay said.  “This gives us hope.”

“We hope these children will develop normally enough to have functional lives, to not be impaired, and do the things normal kids do and to grow up and have a normal life span, but we don't know until we finished the studies we’re doing,” Kurtzberg said.

Lindsey Musgrave says she doesn’t have to wait to know the transfusion is working.

“There’s never a day when I don’t think about what we were told she wouldn’t do and what kind of quality of life she wouldn’t have.  Now to see the total opposite happening, it just blows my mind,” Lindsey said.

Lindsey is now the state director for the Pediatric Hydrocephalus Foundation.  She’s trying to spread the word about just how common this is and about the work being done at Duke. For more information go to http://www.hydrocephaluskids.org.

“My hopes for my daughter are that she’ll live the best life that she can live,” Lindsey said.  “My number one wish is that my daughter will be happy.”

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