Baby fighting battle with cystic fibrosis
Having a baby can change the world for a parent but in one moment that world can stop on a dime.
Erica Melvin experienced that one moment a week after her son, Zion, was born.
Zion received a cystic fibrosis screening, which is a routine procedure for all newborn babies, but his results were anything but routine.
“Cystic fibrosis is a life changer, a card no one wants to be dealt and the craziest ride you’ve ever been on, all rolled into one,” Melvin said. “It is the worst thing to ever happen but in some ways it’s been a huge blessing.”
The results of a sweat test performed on a baby should fall below 40. Zion’s results were 97 and 100.
“I would have never thought in a million years that he would have CF,” Melvin, of Deering, said. “The pregnancy was normal. He was fine at birth. I had no idea anything was wrong.”
Erica said she has every right to be bitter and depressed, but isn’t. Erica has learned to embrace the role that she was given.
“I did say it’s been a blessing and I meant it,” Melvin said. “They say God never gives you more than you can handle but I completely disagree. God gives us more then we can handle all the time. We can attempt to do it on our own or we can turn to him. My faith is stronger because of CF. Every little moment is important and not overlooked. I have made amazing friends all over the world because we have one thing in common, our children are fighting for their lives.”
Since birth, Nov. 20, 2010, Zion has been hospitalized five times. His main problem comes from an inability to gain weight. He is scheduled to have surgery on May 30. Zion will have a gastrostomy tube, which delivers nutrition directly to the stomach, inserted into his abdomen.
“He is having trouble gaining weight.” Melvin said. “It takes four times more calories for a CF baby to gain weight. The G-tube will be left in his abdomen for the long term and he will get overnight feedings to supplement his weight gain.”
Also during the surgery, the doctors will perform a Nissen procedure, which is designed to treat reflux in the stomach. The doctors will also perform a adenoidectomy and a bronchoscope, which will help his breathing problems and lung deficiencies.
Every morning, Zion wakes up coughing and vomiting.
“It’s like he is drowning inside,” Melvin said. “To wake up to your baby gagging every morning is a terrible feeling.”
Cystic fibrosis is a disease that attacks the lungs and the digestive system.
Zion gets regular breathing treatments, along with nine different medications, which include 21 pills a day. Zion takes medication before every feeding.
The average life expectancy for CF patients is 37 because there is no cure. But new treatments are being developed to help patients with the disease.
The Food and Drug Administration has approved a drug called Kalydeco, which is designed to reduce the amount of medications a CF patient must consume.
The FDA is using Kalydeco along with a drug called VX77 to restore lung function in CF patients by up to 30 percent. The FDA is testing this combination on CF patients who are 18 years of age and older.
Until the experiment is available to Zion, Erica and her fiancé, Josh Stallard, have one goal in mind.
“Our goal is to keep his lungs as healthy as possible for as long as possible,” Melvin said.
At 10 days old, Erica got the call from the pediatrician about Zion’s abnormal results. The pediatrician thought Zion would be fine but sent the family to the University of Kentucky Children’s hospital for a sweat test. At 32 days old, Zion was diagnosed with cystic fibrosis.
“It was devastating,” Melvin said. “I don’t know how it couldn’t be. To have a healthy baby at birth and then to be told he has a life devastating disease, it was simply devastating.”
Sunday, Erica and her family participated in a Cure Cystic Fibrosis Pageant, which raised $1,100 toward the fight against CF. There are two Great Strides events coming up on April 28 in Portsmouth and May 12 in Barboursville, W. Va.
The Great Strides events are the No. 1 fundraising events for the Cystic Fibrosis Foundation with 90 cents of every dollar raised goes toward CF research, Erica said.
Erica would like to thank Bob Clyse, Phillips Funeral Home, DuFore Chiropractic and Cross Community Church.
Donations can be made online at www.cff.org/great_strides/ericamelvin.
For more information, Erica can be contacted at (740) 646-3437.