Ellis Malone is helping her family learn to count their blessingsPublished 12:00am Sunday, June 17, 2012
The birth of Caid Malone two years ago was smooth sailing. Even after the birth, he was the “easiest baby,” his parents Heather and Matt Malone said.
Caid was sleeping eight hours through the night. He was eating fine.
So when it came time to decide whether to take the customary tests to determine if Caid’s baby sister Ellis would be born with Down syndrome or other birth defects, Heather said it was an easy decision to turn the tests down.
“It’s not going to change anything,” Heather said she and her husband discussed. “(Knowing the baby had problems) would just make us stressed.”
But after another smooth labor, Heather and Matt heard what every parent fears.
“Dr. (Beverly) Love said there seems to be some abnormalities with the baby,” Heather recalled.
He told her there was some webbing in the hands and feet, which gave her temporary relief.
Heather pointed between some of her toes, explaining that she has skin between her toes that some people might call webbed. That was no big deal.
Then she learned the doctor was having a hard time getting Ellis to breathe, and then she saw how tall the baby’s forehead was.
“It’s amazing how much goes through your head in such a short period of time,” Heather said.
Matt said the most difficult time since Ellis’ birth was those moments of uncertainty.
“Does she have Downs?” Heather said she wondered, guessing it was Down syndrome.
“Was it something she did wrong? Did she work or travel too much while pregnant?” Heather questioned at the time.
“I had a meltdown,” she said.
Within 10 or 15 minutes, their pediatrician, Dr. Jennifer Russ, came into the room with a prognosis.
Russ told the Malones she had never seen Apert syndrome before, but she remembered learning about it in school.
Children with Apert have a very good chance of leading normal lives and reaching normal IQs. Ellis’ internal organs were in good shape. Apert can’t be cured, but it can be treated with surgeries. Life expectancy is normal.
But one of the syndrome’s symptoms, craniosynostosis, which causes the skull to close earlier than normal, would require surgery and a stay in the Neonatal Intensive Care Unit.
Heather has since learned that Ellis will likely have one or two surgeries a year until she is 18 years old in order to keep up with her growthand development. Early on, the number of surgeries will be greater, and it’s uncertain whether surgeries will ever completely separate her fingers and toes.
Because of the effect of the deformity of the skull on the facial bones, Ellis’ nostrils were too small to maintain normal breathing. Since babies breathe mostly through their noses, her condition was critical in infancy.
Following her birth, Ellis spent the next seven weeks in the NICU.
Heather said watching the other babies in the NICU, many of them who were severely premature and not nearly as healthy as Ellis, made her realize how lucky Ellis was.
Suddenly, counting five fingers and toes didn’t seem so important — she had her baby girl.
Adjusting to a new life
Following seven weeks in the NICU, Heather said coming back home was both a relief and an adjustment.
Since Ellis can’t breathe through her nose, she is unable to eat from a bottle. So Heather and Matt have learned to operate a feeding tube at home. The feeding tube attaches to a button in Ellis’s stomach, which was installed through surgery.
Each night, Heather or Matt hooks up a pulse oximeter to Ellis’ foot, which measures her oxygen and pulse and sounds an alarm when her vitals are abnormal.
Heather, who is the Concordia Parish economic development director, said adjusting from hard-working mom to full-time caregiver is more than just a change of pace, it’s a change in identity.
The Malone couple was very independent before, Heather said. She had her job with the parish, and Matt had his at Concordia Bank.
“My (parents) raised us as very independent women,” Heather said.
Now, the couple must get comfortable being more dependent on each other. Even when it’s just playing around on the boat at the lake, Heather said she and her husband are more careful.
Both would struggle raising Caid and Ellis alone, she explained.
“We’ll probably become closer and (grow) more dependent on each other,” said Heather, who admitted becoming a more traditional family might be a good change.
And while Heather said she has been told by parents of children with special needs that the feeling of mourning some of those life stages a “normal” child would go through is a feeling that doesn’t go away, she has also been told that the joy a child with special needs brings to families is its own blessing.
After nearly two months in the NICU with Ellis, Heather said she has thought about how Ellis’ Apert will effect the family’s life for decades ahead.
“Will she want to have kids?” Heather posed.
Ellis’s Apert syndrome is the result of a random genetic mutation. But those who are born with Apert have a 50-50 chance of having a child with the syndrome.
After learning she would probably be able to go to school with other children her age and have a normal IQ, Heather said she worried about the social struggles Ellis will likely face.
Children can be mean anyway because of their brutal honesty, Heather said. So she wants children in Concordia Parish to grow up familiar with Ellis and what she looks like on the front end, though she knows she can’t protect Ellis from everything.
“She’s definitely going to be like, ‘Why me’ when she’s a preteen (dealing with) boys and all that stuff,” Heather said.
But Heather and Matt agreed living in a small town would provide a better opportunity for the community to embrace Ellis with familiarity and warmth rather than odd looks.
“I know some children (I grew up with) who have special needs, and the community wouldn’t be the same without them,” Heather said.
Heather said those who have already met Ellis have been very interested in her diagnosis, and she thinks it’s a good thing.
“I want (the community to) get comfortable with who she is and what she looks like,” Heather said.
The community has already come through, welcoming Heather, Matt and Ellis home with cards filled with money and gift cards to put toward Ellis’ care. Friends of the Malones have already established a nonprofit foundation for Ellis at Concordia Bank, called the Ellis Laine Malone Foundation. Individual donations as well as the proceeds from a charitable golf tournament planned by Matt’s father have raised more than $43,000.
“How do you thank someone for that?” Heather said.
And the gifts have come in more ways than monetarily.
“We’re on everybody’s prayer list,” Heather said.
A blessing, not a burden
Both Heather and Matt said they want to raise Ellis to be as independent as possible, learning to feed herself and complete daily tasks with what she has, just as any other growing child would.
They recognize that Ellis will go through more struggles than other children, and they’re glad she has a big brother in that sense. Both parents said Ellis’ special needs would provide an opportunity for their son, as well as Ellis, to experience special personal growth.
“I definitely think (Ellis’ struggles) are going to make Caid a better person,” Matt said.
Heather joked that Caid might be getting into a fight or two on behalf of his sister.
“He will develop a thick skin and take over as her protector role, I’m sure,” Matt said.
But at age 2, all Caid knows is that Ellis is his baby sister and a potential new friend to play with.
“Sometimes I wish I had Caid’s mindset,” Heather said. “Kids his age don’t see anything different.”
Loving Ellis has also made the adults in the family dig into their own personal growth.
“I thought about what (it is) that God is trying to teach me,” Heather said of dealing with the news of Ellis’ Apert syndrome.
“Were we so caught up in vanity, perception and looks on the outside?”
Heather said she used to think if hands and feet look right, the child was healthy.
Now Heather knows that when Caid kisses Ellis in her special spot, which avoids the uncommon soft spot that resulted as a symptom of her Apert, his unconditional love and perception of his little sister is just as it should be for everyone and the way it is for her family.