My daughter Kirsty Faith Sylvester was born on October 28, 2001 with Frontal Nasal Dysplasia, Multiple clefts (one bilateral and one through exterior of one nostril), and a forehead lipoma coming through a hole in front of skull. Due to these complications she has had to undergo a total of 16 surgeries with all but three of them being held in Atlanta. The three not held in Atlanta were for tear duct procedures here locally at Blair E Batson hospital at a very young age to help her tears drain properly instead of running down her face. She has also had hundreds of laser treatments in Atlanta to try to remove fine hair that grows on her forehead due to her condition. She has also had hundreds of doctor’s visits, X-rays, CT scans, and MRIs without complaints.
Due to the Frontal nasal Dysplasia, she had no bridge to her nose and only one fully formed nostril. She has a V shape pattern than runs from her forehead hairline to the top of her bridge area that has and will continue to grow fine hair that will require removal. Kirsty has had rib bone, ear cartilage, skull bone, and hip bone placed throughout her nose to create a more natural and functioning nose. She has had part of the top of the skull removed and eye sockets broken with 1” to 1 ½” bone cut from the top of her skull to her jaw line and pushed together and eye sockets replaced in new position to help bring eyes closer together.
The surgery I just mentioned was the most frightening time of my life and a day I will never forget. When Kirsty was only 3 months old her doctor in Atlanta asked her mother and me what kind of parents we were. This question caught us off guard, and I did not understand until he explained. He said there were some parents that could not accept that their child was born with a deformity and wanted things fixed now. With that being said, he mentioned that he could perform this surgery but she had a low percentage of surviving; on the other hand, he said that if we waited till she was twelve years old, then she would have an 80% chance. So when she turned 12, I dreaded the day we went to the doctor’s appointment because I knew he was going to tell me it was time for the surgery, and I could not get out of my head what he told me that day when she was three months. The doctor told us the surgery would take a long time and that we would be in ICU for 4 days and in regular room for additional 4 days. The surgery took 7 ½ hours, and all I could do was pray and hope the worst had not happened. When the doctor came out and said everything went great, I couldn’t stop crying. To this day, when I think of this surgery, I break out in tears. When we finally saw her, she was swollen from head to toe and could not open her eyes. She heard me and a friend crying and told us to stop crying because she was ok.
After only a half day, the doctors were shocked that she was not needing pain meds and moved us to a regular room. The next morning the doctor came in and said again due to her not needing pain meds that we could go home after only 1 day. However, Kirsty had bought with her own money 20 stuffed teddy bears for the kids at the Children’s Healthcare of Atlanta hospital for Christmas and said she was not leaving until she could open her eyes and hand out the bears to other children. With all the nasal reconstruction surgeries she has undergone throughout her young life, she has never complained.This beautiful little girl is truly an inspiration to me and others. She has a heart of gold and never looks down on others and does not tolerate bullying from anyone. She has attended a craniofacial camp in Winder, Georgia each year since she was 8; at this camp, for at least one week out of the year, she feels normal because she is around kids like herself. This year, she will be going back as a LIT (leader in training) to help the younger kids feel just like she did growing up while attending the camp.
Even though the doctors in Atlanta have done an amazing job, the last three procedures have had what has been called memory relapse (that is, even though looking great right after surgery the nose relapses to previous look and with that the same breathing issue). We have asked for the last 5 surgeries to target improvement, but the nostril always stayed the same with no improvement in her breathing. This year, we went consulted with many nasal reconstruction surgeons looking for help and many times the doctors said they could not help or that they were not experienced enough to take on a patient with a medical history like Kirsty’s. Time after time, we continued to be told no, and Kirsty was slowly getting more and more down because she thought no one could help her breathe and look as normal as possible with a nose that fits her face. However, one doctor in Beverly Hills, California says he is confident he could give Kirsty not only a better-looking nose but help her breathe better. We flew out to see the doctor on March 14, 2019 to have a consultation and let him truly see her up close and see if he still felt confident. He was not only confident he told Kirsty he had a large soft spot in his heart for children like her and would love to help her.
Even though we found a great doctor we are confident in and Kirsty is excited to have this procedure, my insurance does not cover any of the costs even though the doctor reduced the cost. The cost of the trip including flights, hotel stays, food, parking, and procedures is more than this single father can do on his own, but I am willing to try to do anything to make this happen for her. We are definitely two peas in a pod and it breaks my heart that she struggles so much but never complains. I would love for Kirsty to look in the mirror and see what I already see. To anyone who chooses to help, we thank you from the bottom of our hearts and thankful that the good Lord brought you into our lives. God has watched over her throughout her life and procedures and I know with him guiding us we will be able to help her see the same image we see.