George and Kristine Dale’s Story: Goldenhar Syndrome
Our son, Jeremy, was born on September 12, 1999. Like typical parents, we were very excited about the birth of our first child and were confident that the most perfect little baby would be coming soon. Our perfect little baby did arrive — 7 weeks early and, a shock to us, was born with a severe facial abnormality. Jeremy was 3 lbs/10 oz and 16 ½” long and was diagnosed with Goldenhar syndrome. For Jeremy, Goldenhar syndrome meant a large left facial cleft, extreme cleft palate, the absence of his left ear, an underdeveloped left eye and 2 hemi-vertebrae located in the middle of his spine and at the top of his spine causing congenital scoliosis. Jeremy was immediately admitted to the NICU and stayed there for almost 6 weeks.
The first of many facial surgeries occurred in February, 2000. Jeremy was 5 months old and we were very excited and apprehensive at the same time. Although we knew that this was a step major toward his facial repair, we were sad that the face we loved looking at everyday was about to drastically change. Four hours into the eight hour surgery, the team of doctors came into the waiting room to inform us that they had to abort the surgery due to complications, but that our baby was OK. We were numb and we felt so sad and angry and could not believe that Jeremy had a life full of surgeries ahead of him. Two weeks later, Jeremy was back in the operating room, and the doctors were able to complete facial cleft repair surgery. It was so amazing to see Jeremy after the surgery. The hole in his face had been closed, and he had a cheek and the cutest little lips.
Jeremy finally crossed the 20 lb line when he was 18 months old, and he was ready for his palate repair. The surgery went very well, but Jeremy ended up having a difficult recovery. After we were discharged from the hospital, Jeremy got very sick and ended up dehydrated. He began having breathing problems while he was sleeping and had to get an emergency tracheostomy tube. It was overwhelming at first, but, like everything else, we learned as much as we could and we took everything day by day. A few months later we realized that Jeremy needing the tracheostomy tube was a true blessing in disguise. Jeremy was breathing better than he ever had since he was born. He was getting much better sleep and was growing and developing faster.
Every six months, from the time Jeremy was born, he needed an x-ray of his spine to see if his congenital scoliosis was progressing. In October 2001, Jeremy had a spinal fusion to correct his scoliosis. The doctors removed the hemi-vertebrae in his spine and fused his spine together. The surgery was 10 hours long, and there was a 10% chance of paralysis. Fortunately, the surgery was a huge success, and Jeremy was wiggling his toes as soon as he woke up! The unfortunate part was that he was in a body cast for 4 months (127 days to be exact) after the surgery. The cast did not stop Jeremy. He was running around within a couple of weeks!
We had a little bit of a break after the back surgery, which was good because Jeremy was about to become a big brother. Jeremy’s brother, Tommy, was born in April 2002 without any complications. After all these surgeries, Jeremy was learning and developing so fast. Even though he was able to make noises, he still could not speak, so he was learning sign language and picking it up very quickly!
Now that Jeremy was almost 4, the doctors felt it was time to continue with the facial repair. We were excited and apprehensive about the surgery because we knew that Jeremy’s face was about to change. During the surgery, the doctors took bone from Jeremy’s skull and used it to build the bone around and under his left eye and in his cheek. The surgery lasted over 10 hours. Again, this surgery was a huge success and we were so excited to see the results a couple of days later when the bandages were removed! The upper left portion of Jeremy’s face was almost the same size as his right. It was unbelievable what the doctors had accomplished.
Four years and nine surgeries later, Jeremy has come a long way! He has had wonderful doctors and therapists along the way, and we are extremely optimistic about what the future holds for Jeremy. However, he does have many years of surgeries ahead of him, including continuing facial repairs and an ear reconstruction.
Despite all of the medical needs, Jeremy is a typical kid who loves to play music and watch the “Wiggles” with his brother. He attends preschool and is learning and communicating with sign language. Jeremy has a wonderful personality and has a lot of friends at school. It’s amazing how quickly he recovers from surgeries and procedures. We are always so proud of him. We’ve all had our struggles with stares and comments from people who don’t understand, but we handle each one as it comes. We try to explain Jeremy’s condition and educate as many people as we can. To those who know and love Jeremy, he is still that “perfect” little baby boy who was born 4 years ago.
Last Updated: Jul 24, 2006