On January 25, 2011, Andi appeared two weeks early and with a big surprise. Much of that night is a blur, but we remember hearing the doctor say, “We have a cleft!” at which time the nurses scurried around, running in and out of the room with a variety of instruments and with looks of concern on their faces. Level III ultrasounds did not pick up on the fact that Andi had a cleft lip and palate. She kept her face well hidden during those photo shoots. Within 24 hours, we sat sobbing in the office of Joseph K. illiams of Children’s Hospital of Atlanta holding this tiny, precious baby with a hole in her palate and her lip. His calm demeanor was appreciated but undervalued. So many questions ran through our minds that his words of comfort fell on deaf ears.
Yet we remember them today…”It’s going to be okay.”
That day we saw a geneticist, a nutrionist, a dentist, and a surgeon. Tape was placed over her the two separate pieces of her upper lip and we were given special bottles with which to feed her. Within two months Andi had her first surgery. In the nine years since, there have been eight more. There is nothing harder than handing over your baby, toddler, or little one to a nurse to be taken into a surgical theater. There are no words of comfort that can calm your racing heart. Only the words, “The surgery went very well. She’s doing great,” have any consequence. It is that way even now.
On that first day, Dr. Williams laid out for us the course of treatment. Now his words are clear. He said, “By the time Andi is old enough for a bone graft, we may have something that will make it unnecessary to take bone from her hip.” We weren’t thinking eight years ahead at that moment. We were trying to get through the next eight minutes, eight hours, eight days. He was right, however. When Andi went in for her check-up before the bone graft was to be scheduled, Dr. Williams told us of a new protein used to grow new bone. It is called Bone Morphogenic Protein, or BMP, and it makes grafting bone from the hip unnecessary. This can cut the healing time in half. He gave us information and asked us to read it and let him know if we were willing to try it. We voraciously searched for everything we could find, spoke to doctor friends, and decided that it was a viable option. Andi was part of a study because BMP was still new in cleft repair surgeries at the time. The only downside to it was the amazing amount of swelling after the surgery. Her recovery time was very quick and uneventful, save for the swelling. The bone that grew is very strong!
Andi has, like every other cleft child or child with any kind of noticeable “difference”, had to undergo her share of taunts, stares, and questions. She has survived them relatively unscathed. Several incidences made her cry but she handled them well. As she has gotten older the comments have stopped. Perhaps it is because the kids around her know her so well that it is a non-issue, or perhaps it is because as we get older we acquire filters that allow us to know that a question about someone’s appearance could be hurtful. Whatever the case may be, the questions have stopped. Andi doesn’t call attention to her scar but will gladly answer with great detail if someone were to ask what the scar is from.
Being a very active and athletic child, we have watched Andi struggle at times with breathing issues. Her left nostril tends to collapse over the years between revisions and almost closes up. This leaves only one “good” side with which to breathe. If she gets a cold, she literally becomes a mouth breather. She has also had her share of ear infections and ear tubes. Her hearing is monitored every year and seems to be okay, if on the low end of normal. Her speech is absolutely amazing. She still receives Speech Therapy at school but only at the insistence of her parents. As a Special Educator, I know how difficult it is to get an IEP for your child and I don’t want to let hers go just in case. She doesn’t want to go to Speech Therapy and honestly, her need for it isn’t great, but we’re not letting go just yet.
A few months ago, as we were leafing through a magazine together, Andi saw an ad for The Smile Train. The picture was of a child around her age and the caption read, “Give a child with a cleft lip and palate a second chance at life.” Andi was aghast that this child had not had surgery. She carefully tore the page out and ran upstairs and posted it on her wall. She came downstairs and said, “We have to do something.” That was the beginning of Andi’s Smile Page on Facebook and her work to help other kids around the world have the same chances she has had. It has been a wonderful education for her. She has learned about insurance, famine, beliefs, and prejudice. She is more determined than ever to make sure these kids are taken care of. She still has the precious outlook of a child that makes everything possible. We hope she never loses it.
We couldn’t be happier or prouder of Andi. She has endured pain that would bring a grown man to his knees with barely a complaint. She has endured taunts, stares, and questions about her appearance. She has determined that she will use what she has gone through to help others who are not as fortunate. Through it all, she keeps smiling that beautiful, sweet smile that makes her perfect in our eyes.