One of This Month's Featured Families!
March 2004
Jeremy
Born September 12, 1999
Goldenhar Syndrome
New York
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 arrived 7 weeks early and un-beknownst 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 a 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.
Jeremy was a month old when he had his first surgery - a Nissen Fundoplication and Gastrostomy. The Nissen was done to prevent reflux and the G-tube was placed in order for Jeremy to eat.
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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. The plan for the surgery was to place a rib graft in Jeremy’s left cheek and to close the skin of the facial cleft. 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. Jeremy’s heart stopped beating they had to resuscitate him in the operating room. They said that he was okay and that no permanent damage was done.
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Jeremy had just turned 1, and we were so grateful for our perfect little baby that was growing up so fast, when he started having reflux problems again. The doctors had determined that the Nissen that was done a year ago had herniated into his chest and they needed to repeat the surgery. So, in January 2001, Jeremy had his second Nissen Fundoplication. Little did we know how surgery-packed 2001 would be for Jeremy.
Jeremy finally crossed the 20 lb line when he was 18 months old and he was ready for his palate repair. In March of 2001, Jeremy had his palate closure surgery. The palate was
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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.
In June of 2002, Jeremy was scheduled for a bronchial scope. The doctors decided that it would be a good time to divide his pharyngeal flap. The goal was to open up Jeremy’s airway a little bit. While the doctors were doing the procedure, they decided that it would be a good idea to remove his tonsils as well. This was a quick surgery and recovery for Jeremy and one with a lot of benefits. A few weeks after the surgery, Jeremy was able to start passing air and was able to make noises. It was so nice to hear Jeremy’s voice. It had been over a year!
After his tonsillectomy, Jeremy had a full surgery-free year and it was wonderful! During that time he was a great big brother and he 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!
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Jeremy right after being discharged from the hospital (2 months old)
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 the 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 right before his facial cleft repair
closed with the help of a pharyngeal flap. 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. Exactly three weeks after the palate surgery, Jeremy began having breathing problems while he was sleeping. Jeremy was admitted into the hospital and his second night there he stopped breathing. It took the PICU team and a variety of other physicians to stabilize Jeremy and get him
intubated. The palate closure and pharyngeal flap had restricted Jeremy’s airway and the stress was causing the airway to become obstructed. Jeremy needed a tracheostomy tube to help him breathe. After Jeremy’s palate surgery we felt like we had taken a huge step forward, now it seemed like we were taking 3 giant leaps backwards. The tracheostomy tube was overwhelming at first because of the dangers and added equipment and supplies. But, like everything else, we did what we could to learn 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, Jeremy needed an x-ray of his spine to check to see if his congenital scoliosis was progressing. In the summer of 2001, after his tracheotomy, it was
determined that Jeremy was going to need surgery to correct the scoliosis. So, in October of that year, Jeremy had a spinal fusion. The doctors removed the hemi-vertebrae in his spine and fused his spine together. The surgery was 10 hours 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!
Jeremy with his facial cleft closed
Jeremy in his body cast
The surgery break came to an end and Jeremy was scheduled for a major surgery in August 2003. 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 and he had an incision from one ear, across the top of his head, over to where his left ear would be. 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.
Jeremy at 4 years old
It felt like Jeremy had just recovered from surgery and we were headed back again. This time it was for a costo chondral graft in his left mandible. In January 2004, the doctors took one of Jeremy’s ribs and grafted it in his lower left jaw. The surgery was a success medically, but it was a hard one emotionally for Jeremy. He was very uncomfortable, sad and angry. It usually takes Jeremy little to no time to bounce back to his normal self, but this time it took a little bit longer. He’s starting to get to an age where he doesn’t fully understand, but he knows that he does not like it!
Four years and ten 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. We are hoping that the day will come soon when the trach can be removed. Jeremy has many years of surgeries ahead of him including continuing facial repairs and an ear reconstruction. Eventually, Jeremy will also need a prosthetic in his left eye. 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 pre-school 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 the looks, stares and comments of those people who don’t understand, but we handle each one as they come and we try to explain about Jeremy and educate as many people as we can. To those who know and love Jeremy, he is still that “perfect” little baby boy that was born 4 years ago.
George and Kristine Dale
Jeremy and his little brother, Tommy
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This cleftAdvocate page was last updated March 25, 2014
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