Boy with Goldenhar Syndrome

While Jessica was pregnant with her son Griffin, she and her husband Johnny were told he had a heart complication-Tetralogy of Fallot. It wasn’t until Griffin was born that they realized there were more complications. After running tests, Griffin was diagnosed with Goldenhar syndrome.

Goldenhar syndrome is a congenital facial defect.  It usually involves incomplete development of the ear, nose, soft palate, lips, and the mandible.  Sometimes there are also internal problems with the spine, heart, lungs, and kidneys.  Griffin is affected on his left side.  His left ear did not develop which makes him 100% deaf in that ear.  The left jaw is also underdeveloped and he has a hypoplastic left thumb.  Internally, Griffin has his heart complication and scoliosis.

Parents Hearts Changed After Diagnosis

The year before Griffin was born, Jessica had a miscarriage.  When she was pregnant with Griffin and discovered he had a heart defect, Jessica and Johnny decided to have an amniocentesis done.  The results came back negative so they were relieved that it was just the heart defect they had to deal with.  Once he was born, however, they realized there were so many other problems they would need to address. It would have been easy for them to be discouraged.  Instead, they decided to be grateful because “he was here and he was alive.”

Challenges Families Face with Goldenhar Syndrome

“The hardest things that we’ve had to face are probably navigating and juggling appointments,” said Jessica.  With the list of disabilities that come with Goldenhar syndrome, you spend a lot of time at clinics seeing specialists and surgeons.  For Griffin, his biggest challenge is navigating his 3rd-grade classroom, trying to get by even though he is deaf in one ear.

A Diagnosis is Not a Bad Thing

Jessica describes Griffin as being an upbeat child.  He is comfortable in his own skin and doesn’t understand why people would feel sorry for him.  It is true, he has had lots of surgeries and appointments but he says, “that’s just what I do”.  He is a great advocate because he loves to tell people about himself and his diagnosis.  His attitude toward life is what brings joy to his parents, siblings, and extended family.

Griffin has an older and younger brother.  Both have them have learned empathy from Griffin.  Hunter, the oldest, has also learned the importance of being an advocate, not only for Griffin but also for himself.  Hudson is nurturing, especially after Griffin has a procedure done.

Sometimes when a child has a disorder, parents are worried about how the siblings will be affected.  That hasn’t been a problem for these brothers.  Johnny said, “There are never any complaints or negativity whatsoever towards Griffin.”

Words of Advice: “Lean on others”

“Lean on any support you have and lean on your faith.”  Doing those two things have gotten Jessica and Johnny through some very difficult times.  They believe the Lord has given them peace and guidance in their journey which enables them to handle everything with grace.

Next is to lean on any support you have.  If you have extended family that can assist you, let them.  For some, couples don’t live near extended family which makes it more crucial to seek out early intervention programs for your child.  Jessica says, “Plug into the resources that are available to you and do not be ashamed of that.”  Starting therapy and getting an IEP at age two has done wonders for Griffin.

Getting support also involves connecting with families who have children with Goldenhar syndrome or a similar diagnosis.  The Children’s Cranial Association, CCA, is a great support system.  For the longest time, Jessica and Johnny didn’t reach out to this group because they had great family support.  Once they did connect, however, things changed.  They were able to talk about struggles they’ve had with other parents who understood what they were going through.  Even better, Griffin got to meet other kids his age that looked like him which boosted his confidence even more. “Making the connection was huge.”

Your Child’s Future with Goldenhar Syndrome

Many people with Goldenhar syndrome go on to get married, attend college, and have successful careers.  By taking advantage of early intervention resources, recognizing the joy your child will bring, and teaching them to be proud of who they are, your child will live a fulfilling life.


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