It was a cold, rainy January day in 2019. My husband and I were anticipating an exciting occasion as we prepared to go to doctor. I was halfway through my second pregnancy which meant that I was due for the ultrasound where we would learn the gender of our baby. But the worst of fears actually happened. We were informed that our baby appeared to have severe deformities. We were encouraged to terminate the pregnancy. My head began to spin and reel with the shock of the news as well as the suggestion of termination from the medical staff. We immediately left that office and found another practice. We chose life!
Arabelle [Belle] Highland McLaughlin was born April 26, 2019. Choosing her name was an opportunity for us to express our belief in her great worth. Arabelle is Gaelic for beautiful. Although the professionals did not see any value in her, God had made her perfectly fit and beautiful for who she was. Her deformities were labelled as Apert Syndrome. Apert is a genetic mutation on the 10th chromosome and is characterized by fusion of the skull as well as facial and limb deformations. Although she looked so perfect and calm in our arms, we knew she was facing many surgeries. Without medical mediation, Belle would not live to see her first birthday.
At three months Belle had the first of many surgeries. The sutures in her skull were fused and intervention was critical. After the surgery a helmet was necessary for two years. Next, the concern switched to her hands. Both hands were totally enveloped in skin. The bones of her fingers were in there, but there was no palm and no skin wrapped around those bones. Her hands were syndactyly attached. It was as if she had a mitten on both hands with no flexibility nor separation. To date she has had three surgeries on each hand in order to release all ten fingers. Over the next several years, Belle will continue to have multiple surgeries on her hands.
In addition to skull and hand repairs, Belle is facing several facial and tarsal bone rehabilitative procedures. Due to an extremely high palate and a severe underbite, she must have multiple reconstructive surgeries beginning at the age of seven. Doctors will reconstruct her jaw and expand the palate. After these procedures, orthodontic appliances will be necessary for many years. Belle’s precious little feet are webbed and slightly clubbed. The feet also have excessive cartilage and extra bone which form knots. These knots protrude out the sides and on the top of the foot causing pain and a limp. Resent visits to the doctors have included the making of casts of her feet in order to provide her with pedorthic devices intended to correct and to relieve pain. Plans are being made for future surgery that will separate the big toes which will improve her balance and walking skill. The doctor happily says, “I want her to be able to wear flip-flops.”
Belle does not see herself as any different from her sisters. Her big smile is the first thing people notice about her. She loves to meet new people. Each greeting is followed by a hug, then a high five and a fist bump. Belle has many, many friends. This year is Belle’s first time in a special needs school. Being in school has broadened her social skills and increased her confidence and vocabulary. The patience and care of the school’s staff is exemplified in the serious and loving attention they give to every detail of Belle’s development. Belle also has a large support group at home and in the extended family. She has active grandparents, many aunts and uncles and a growing number of cousins amounting to 27 currently. Most of all, Belle has two wonderful, loving sisters Magnolia and Evelyn. They will be her mates for life. Although Belle may run a little slower and lag behind her sisters, she will never be left behind. Mom and dad swell with joy.