In this followup interview, Maria shares what life is like with her daughter Serenity, who has been surprising doctors from the minute she was born.
Trisomy 18: A Story of Hope
The Backstory
When we first found Maria, she was close to giving birth. She was encouraged by several doctors to terminate her pregnancy. Maria wanted to give her baby a chance! Maria had this to say about her prenatal journey, “I was choosing life no what the diagnosis was. As long as she had a beating heart, I was to fight for her.”
Maria lived in a small town that had very limited prenatal care. When she felt like she wasn’t going to receive the help and care she needed, she chose to move hundreds of miles to find a doctor who was willing to help deliver Serenity.
Serenity Grace was Born
Serenity has been surprising everyone since the day she was born! Coming a day earlier than her planned induction, she then shocked the seven medical professionals in the room when she came out crying! Maria recalled, “They expected her to pass within minutes of delivery and they expected her to go on oxygen immediately and none of that came true.”
“She was this beautiful baby girl that cried immediately..she was just perfect, just absolutely perfect; they expected her to be born with deformities and the was it turned out the geneticist was shocked, the team was shocked.”
“Just Give me Fifteen Minutes to Love Her”
All Maria wanted was to be able to get the chance to tell Serenity how much she was loved. She said, “I just prayed and I asked God if he could just give me fifteen minutes to love her. To tell her how much I loved her..and when God gave me fifteen minutes I asked him if he could just give me fifteen minutes more…I remembered just asking if I could maybe have another day with her to love on her. May 11th of this year Serenity turned two years old.”
Mosaic Trisomy 18
Serenity is very rare in the fact that all of her cells affected by Trisomy 18. “60% of her cells have the third copy of the 18th chromosome, 40% of her cells are completely normal.” Maria explained.
Serenity has Mosaic Trisomy 18. Every part of her body will be affected in different ways. Maria explained some of the symptoms Serenity has, “So, neurologically she’s delayed. Her speech is delayed..she has very low muscle tone..she’s delayed developmentally.”
Advocating
Maria has been advocating for Serenity since she was 10.3 weeks gestation, when she first found out about her diagnosis. “Because of the Trisomy 18, a lot of doctors don’t believe in providing more services…but it’s been advocating, just having to advocate for her since birth.” Maria stated in reference to what’s been challenging about raising Serenity.
“I’m out there advocating for her. Since she was two months old, I signed up with services to get early intervention for her.”
Daughter with Disability Becomes her Mom’s “Everything”
“Breathing, waking up just her smiling and knowing that, that beautiful face is going to light up as soon as she sees me…she lights up, i’m her world but she doesn’t realize that she’s my world. She’s my everything.”
“Don’t Give Up”
“The best advice I can give is don’t give up, don’t give up no matter what. Doctors are practitioners. They are practicing medicine…ask a lot of questions, question everything. Find out about your babies’ diagnosis. No matter what keep fighting, if your baby had a beating heart, then your baby has a shot.”
“Your baby hasn’t stopped fighting and your babies’ heart has not stopped beating so you don’t give up no matter what.”
Maria lived in a small town that had very limited prenatal care. When she felt like she wasn’t going to receive the help and care she needed, she chose to move hundreds of miles to find a doctor who was willing to help deliver Serenity.
This is so inspiring. Thank you so much for sharing your story. I’m 37 weeks along with my Trisomy 18 baby and this gives me so much hope and courage.