Our NTD Story

01.22.18

January is Birth Defects Awareness Month. In addition to educating everyone about the importance of folic acid in the prevention of neural tube defects, we also want to honor those amazing, brave, and resilient families who have faced these devastating circumstances and have persevered. A special thank you to the Jones family for sharing their story below to help others avoid the heartbreak they have endured.

The journey to becoming parents did not start as an easy one for me and my husband, Chris. We suffered the heartache of miscarriage and then the unimaginable
pain of burying our first born child. Our son, sweet 1 lb 1.4 ounce, 12 inches long, teeny, tiny little Joseph “Hamilton” Jones was born with a spina
bifida (a neural tube defect or NTD), hydrocephalus, and a heart defect. It tore our hearts out leaving the hospital without him, knowing our dreams
and hope for the future were shattered. The next time that we would see him would be at a funeral home filled of people who had lived their lives for
decades… his life was only a short 2 hours and 40 minutes. My husband and I were left choosing a small white casket, not much larger than the
size of a shoebox for him to be buried in.

After things began to settle down, the sweetest nurse visited us in our home, in the fall of 2007. Her name was Jane, and she was with the Greenwood Genetic
Center located in the upstate of South Carolina. (She had traveled over 4 hours to visit us!) She was, and still is, passionately committed to providing
heartfelt and compassionate care to families affected by genetic disorders.

A part of Greenwood Genetic Center’s mission is researching the causes of these disorders, supporting the families that are affected by them, and discovering
ways to prevent them from occurring as frequently. The hope is ultimately to prevent genetic defects from occurring at all.

The information that was gathered from the research is complex, but the methods in preventing several neural tube defects from occurring are simple …
Folic Acid. A small pill, a multivitamin, ONLY 400 mcg, that is taken once daily! I began taking the multivitamin after our loss, and also began eating
foods that were rich in folate (spinach, broccoli, asparagus, eggs, cereal etc.)

Seven years after the devastating, life shattering loss of our son, and meeting Nurse Jane Dean, in the winter of 2014, we welcomed our beautiful daughter
Brynleigh. She was born as healthy as can be, weighing 7 lbs 9 ounces. About a year and a half later, our son Preston was born, also a super healthy
little guy, weighing 9 lbs 1 ounce! And a year and a half later after Preston’s birth, we welcomed another baby girl, Ellieana, weighing 7 lbs 11 ounces.
Today, we have a healthy 3.5 year old, 2 year old, and 9 month old. These sweet, precious miracles are a gift from God.

We are thankful for the research of the Greenwood Genetic Center and the efforts spent towards supporting the families affected by genetic defects and
preventing them from occurring in the future. We will be forever thankful for the services that they provide to our community and the compassionate
family that we gained in them, after such a life shattering loss.

By: Alicia P. Jones

 

Meet Makayla Gunn

Makayla was diagnosed with Rett Syndrome in April of 2015 at the age of two. At about 18 months, we noticed she had started some repetitive hand motions, and her pediatrician was a little concerned that she did not have many words. She had learned some sign language, and was saying ‘mama’ and ‘dada’, but that was it. Then she suddenly stopped all of that. At her 2 year old check-up, the pediatrician referred us to BabyNet, SC’s early interve...

In The News