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Trisomy 13 Essay

2043 words - 9 pages

Trisomy 13 and the grace of God
Veronica Hale was a very dedicated woman to her family and to God as well. In 1998, she gave birth to a baby girl with a rare disease known as Trisomy 13. Also referred to as Patau’s syndrome, is holoprosencephaly due to an extra chromosome 13, in which central nervous system defects are associated with mental retardation, along with cleft lip and palate, polydactyly, and dermal pattern anomalies, and abnormalities of the heart, viscera, and genitalia. This genetic disorder is caused by a person having three copies of genetic material from chromosome 13, instead of the usual two copies (V.Hale 2) Veronica was told by many physicians and other medical ...view middle of the document...

Hale)

Veronica knew that caring for a child with Trisomy 13 would not be easy. The care for Molly was going to be very arduous, but Veronica being the dedicated woman that she is, chose to bring her child home, and do her best to love and care for her as if she was as healthy as any normal child. She wanted to take care of her baby herself, and she felt as if God had prepared her through her medical background (V.Hale 3). Veronica had experience with inserting a feeding tube, which Molly would be fed through since she had an inability to nurse normally. She had experience with sterile technique, which would be required after multiple surgeries Molly would need. Some of the surgeries, for example, are open heart surgery, intestinal surgery, and surgeries to her help to walk if she would ever be able to walk (V.Hale 4). Molly was born with an omphalocele, which is a birth defect in which the intestines or other abdominal organs are formed outside of the abdominal cavity, covered only by a thin layer of skin-like material, which can easily be seen through. Without proper care, and sterile technique, the omphalocele is extremely prone to infections, and other bacteria. “I knew that there was a possibility of death, but I took it one day at a time. Everyday praying that today wouldn’t be the day. Nevertheless, I knew there was also a possibility of life” (V.Hale 5). Veronica, though she seemed very determined that her child would live, was also very terrified of losing her child that she wanted so badly. She sought help from her mother, who was a nurse, from Home Health nurses, and together they were able to prevent an infection of the omphalocele (O.Lester 2).

On November 16, 1998, Molly Grace Hale left this world from her mother’s arms. Veronica was devastated, and Molly’s death caused her to be emotionally distraught. For several months she withdrew from people and churches because she didn’t want to be around anyone that had a small child. Veronica was afraid of having another child because she thought there was a good possibility that a second child would have the same disorder. She felt that she had lost the only child she may ever have. Through medical professionals and genetic testing, Veronica learned this was probably just a fluke and she had a ninety-nine percent possibility of having a healthy second child. Other children caused her to yearn for her Molly even more. (O.Lester 3). “It’s something that I had to learn to live with, but I feel like it made me a better mommy for my second daughter when she arrived two years later who was very healthy. I still struggle with it every year around her birth date and death date. Molly’s death has taught me to value time with my second daughter, my other family members, and all of my friends, because in a moment, it can all be gone” (V.Hale 6). “Veronica’s husband, Mark, was annihilated emotionally. He wouldn’t talk to Veronica about Molly for the longest time, because he blamed himself...

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