March 9, 2016 EditionAlso in this issue...
Mother strives to spread
Jennifer Lewis of Walnut Ridge has become an advocate for her daughter, Preslee, and all children who suffer from the effects of CMV (cytomegalovirus).
TD Photo ~ Gretchen Hunt
While the Zika virus is receiving massive amounts of media attention, a Walnut Ridge mother is continuing her efforts to make sure people know about a virus that is already present throughout the United States.
For Jennifer Lewis, whose 18-month old daughter Preslee Skye was affected by Cytomegalovirus (CMV) while in the womb, it is unacceptable that CMV is not in the news, and even more unacceptable that information isn't being given to expectant mothers.
"CMV is a nationwide virus that goes unmentioned in health departments and OBGYN offices around the nation," Lewis said. "I want everyone to know about CMV. It's preventable; it shouldn't go unnoticed."
Between 50 and 80 percent of people in the United States have had a CMV infection by the time they are 40 years old. Once the virus is contracted it stays in the person's body for life.
A CMV infection among healthy children and adults is rarely a cause for concern and simply causes cold-like symptoms. But when a woman contracts it for the first time while pregnant, the results can be devastating.
"When I was pregnant with Preslee, things seemed to be normal," she said. "It was my fifth pregnancy, and I was working as a CNA at the time."
A routine ultrasound at 16-18 weeks noted dangerously low amniotic fluid, calcifications on Preslee's spleen and liver and a problem with her bowels.
"At that time, they scheduled us to be seen at UAMS in Little Rock the very next day," Jennifer said.
The news at UAMS was not good.
"Our daughter's head was measuring five weeks behind, she had microcephaly, severe brain damage, as well," she said. "She was not expected to survive the pregnancy."
They continued to make weekly follow-up visits.
"At every visit an ultrasound was performed, and her heart continued to beat," Jennifer said.
During this time, the Lewises learned about CMV for the first time.
"My blood work had come back, and it was confirmed that I tested positive for CMV. I had a primary (first-time) infection," Jennifer said. "With all the signs and symptoms our baby was showing, they were certain the virus had in fact crossed the placenta and infected my precious baby."
Jennifer said that for a long time she blamed herself for what was happening to Preslee.
"We don't know how I got CMV," she said. "Was it because I had a toddler who went to a daycare? Was it because I worked in a hospital? These are questions I would continue to ask myself."
Preslee continued to defy the odds and surprise the doctors.
"I remember when I was about 30 weeks pregnant, I went to see my regular OBGYN and his actual words to me were ‘You know, every time you come in here I'm surprised that she's still alive,'" Jennifer said. "Those words felt like a knife stabbing me in the chest, but it was a reality that I didn't know if I would have to face or not."
Then at 31 weeks, with Preslee measuring at 22 weeks and her heart getting weaker, the doctors urged the Lewises to induce labor.
"The social worker came in and talked about how our baby would not survive and nonchalantly mentioned how the hospital had little white gowns to ‘dress the deceased baby,'" Jennifer said. "I was sick, my husband was sick, as well. This was the moment I let God take control. I decided to continue my pregnancy … I prayed and prayed for time, time for our little miracle to grow more, to prove the doctors wrong."
They made it to 37 weeks.
"Our baby was a fighter," Jennifer said. "I was induced on Aug. 16, 2014, and at 1:17 p.m. our little miracle was born, and she was breathing on her own!"
Born at two pounds, 13 ounces, Preslee spent the first four weeks of her life in NICU and went home weighing four pounds. Blood tests at two days old confirmed that she had congenital CMV.
"She faces challenges every day," Jennifer said of her daughter's life with the effects of the virus. "She takes five different medicines twice a day. She has so many doctors and specialists that we see."
Today, Preslee is 18 months old, though developmentally she is at about a two-month-old level. She suffers from severe microcephaly, severe brain damage, bilateral hearing loss, cortical visual impairment, seizure disorder and spastic quad cerebral palsy.
She is g-tube dependent, a silent aspirator and is developmentally delayed, still unable to hold her head up, roll over or sit up. Her condition has resulted in Jennifer staying with her nearly all the time.
"It is hard because others are nervous to watch her, and I'm scared to leave her," she said.
Jennifer has become a full-time stay at home mom, while her husband, Jeremy, works for the water department. They have four older children, Hunter Henry, 11, Riley Henry, nine, Jaxon Henry, seven, and Lexie Lewis, four.
Jennifer said while she never imagined having a special needs child, she believes God blessed them with Preslee.
"She made me realize the importance of life itself and the beauty of it," she said. "She has definitely changed my husband and myself and my other children. They are going to grow up with first-hand knowledge of how to treat those with special needs."
As far as the Lewises know Preslee is the only child in Lawrence County who is facing the effects of congenital CMV. Jennifer said she is in contact with another CMV mom who lives in Bay and also is a member of a CMV Mommies group on Facebook. Networking with others and faith in God helps as each new challenge is faced.
"My faith is stronger now than it ever was before," she said. "I grew up in church, but this little girl has made me more of a believer than anything. She is a miracle. She is a fighter."
And now her mother has become a fighter, as well, fighting for Preslee and fighting to prevent other children from facing the effects of CMV.
"I had never even heard of CMV before," she said. "Why wasn't I informed on how to prevent it? Why isn't there routine testing for pregnant women?"
While CMV is not generally spread by casual contact, it is not a sexually transmitted disease. It is spread by contact with bodily fluids, such as saliva, urine or breast milk. Contact with the saliva or urine of young children is a major cause of CMV infection among pregnant women, with hand-washing being the most effective defense.
Jennifer also advocates for prenatal testing to see if mothers are at risk for a primary infection.
"I want other people to know about CMV so they don't have to go through it," she said. "Why isn't there a little pamphlet at the OB office asking have you ever heard of CMV? It is definitely something to be warned about."
When Preslee was born, the results of her first MRI were devastating, and the Lewises were given the advice to take her home and love her for as long as they could.
"We don't know how long we have with Preslee, but we thank God daily for blessing us with this miracle," Jennifer said. "She changed our lives for the better."
And yet, they must watch their daughter suffer the effects of a virus that most people don't even know exists.
"We need to spread awareness of this horrible virus," she said. "Please get educated and help prevent CMV from harming another baby. I feel it is my duty as Preslee's mother to advocate for her. I am her voice, and I will always fight for her."
More information on CMV can be found at www.stopcmv.com.
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