Teen Parents Raise Daughter with Genetic Disorder

PublishedThe Rampage, Volume 47 Number 6, April 2015

“Yeah, I have a daughter. I’ll show you some pictures; … I’ll tell you life stories; … I’m not going to hide her, because I’m proud to have her. I got pregnant and I had a daughter.”

In August of 2014, the summer before her junior year, 16-year-old Marianne Demelletes gave birth to her daughter, Aliyah Ward. She and her boyfriend, junior Ronnie Ward, found out three months later that Aliyah has Trisomy 18, a rare genetic disorder that causes carriers to have an extra chromosome.

The disorder only occurs in around one out of 6,000 births and most babies born with full Trisomy 18 do not live past their first birthday, according to the Trisomy 18 Foundation. Aliyah struggles with holes in her heart, breathing troubles, slow growth and underdeveloped motor skills. However, she has been diagnosed with partial Trisomy 18, which means she can live a full life with some disabilities.

“It’s a rare condition. You can’t compare her with other babies,” Demelletes said. “There are Down Syndrome babies, which is Trisomy 21, and you can find them anywhere. … But Trisomy 18 babies, they’re so rare that you can’t … tell what’s going to happen.”

Aliyah’s disorder is not noticeable in her facial features or general behavior. Because her development has been delayed, one would only know she has Trisomy 18 if they asked her age. At eight months old, Aliyah has just started lifting her head on her own, but a healthy baby would be sitting up and crawling. She also had to have surgery to insert a gastrostomy tube through her abdomen Feb. 18 to deliver nutrients directly to her stomach.

Since the surgery, she has doubled her birth weight from six to over 12 pounds and is more energetic and active during the day, while before she would sleep for hours at a time.

“She’s lovely; she’s interacting. She’s still delayed, but she will catch up,” Demelletes’ mother Marilou Johnson said. “It’s a challenge, but she has a lot of support … we’re positively thinking.”

During Trisomy 18 awareness month in March, Demelletes reached out to the Class of 2016 Facebook group and junior Jonathan Garcia to get support and to inform her classmates about Aliyah’s disorder. Over 40 students wore blue March 18 to display their support for the family and read the link Demelletes provided on her Facebook post to learn more about the disorder.

“I was actually really surprised … I didn’t think that many people would actually care about it,” Demelletes said. “[Jonathan] told me to meet him in the second floor rotunda during lunchtime and I saw a bunch of people there and then I just started crying; it was so nice.”

Demelletes wants people to know about Aliyah and understand that her life is very different from children born with other genetic diseases. Since Trisomy 18 is rare and unpredictable, the family takes a day-by-day approach. There are no set expectations as Aliyah’s life progresses. There are only a few people capable of operating her feeding tube and the family is cautious about who they trust to watch her.

She requires extensive care, so Johnson has taken night shifts for her job as a nurse in order to watch Aliyah during the day. Ward’s mother also takes time to watch Aliyah during the week while Ward and Demelletes are at school.

Being pregnant during the school year was hard, Demelletes said, when her symptoms started in the spring of 2014. Her mother, friends and other students found out she was pregnant, and she and Ward were judged and misunderstood. They even lost friends who would not accept their situation. Johnson said she was very angry at first because she found out after Demelletes had already been pregnant for six months, but gradually she overcame that anger.

“Marianne has no choice; it’s responsibility. She brought [Aliyah] here in the world so she needs to stand up for that,” Johnson said.

Demelletes and Ward have found joy in having a daughter to come home to. Both feel that through their experience raising Aliyah, they have matured and grown into better people.

“I used to be a straight-E student. I couldn’t get good grades and I would constantly slack off; I never really wanted to get involved,” Ward said. “Since I’ve had my daughter I’ve become a better person. [I want to make] a better life for her.”

Demelletes is looking into attending college after graduating next year, rejecting the idea that because she is a teen mom, she will not be able to live a full life.  With the support of each other and their parents, she and Ward have found ways to make it manageable to care for Aliyah while taking on high school.

“My life is not over. My life actually just started,” Demelletes said.

 

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