- Kennedy was born in May 2002. Within seconds we knew that things weren't right. Within hours we were given the diagnosis of Goldenhar Syndrome, had appointments set up at various clinics, and were brought up to speed on ALL the possible issues that she could face in her immediate and long-term future. By that night, a blue Kennedy was being rushed to the NICU where she would spend her first week of life, learning how to eat without choking. At two weeks old, Kennedy had her first major cold/sinus infection. We knew then that it was going to be a rough babyhood, filled with many illnesses and bumps in the road.
- At age 2, after two years of regular visits to a development clinic, Kennedy was cleared with no signs of mental/cognitive delays. Although rare with her craniofacial syndrome, the possibility exists. This was a huge weight off of our shoulders, as we knew the physical aspects of the condition were going to be aplenty. Age 2 also brought her first surgery. With her syndrome, Kennedy was born with no teeth enamel and it was wreaking havoc on her little baby teeth. She underwent surgery for multiple root canals, crowns, and other dental work. This was an eye-opener for us. Surgery was difficult. Recovery was difficult. And we ended up back in the ER the next day with a collapsed lung. We knew then that future surgeries were going to be scary.
- Age 3 was a triple whammy. 1. We knew Kennedy was deaf on the right side at birth (she was born with no ear and the inner workings of that ear were not normal). But due to many, many ear infections in her first three years, it was determined that she had lost most hearing in her left ear as well. We were introduced to the world of hearing aids. 2. Kennedy also failed her eye exam. We were sent to a pediatric eye specialist and learned that the eye on her affected side never learned how to focus and she was essentially blind in that eye. We were introduced to the world of eye-patching as well as contact lenses (without an ear, she couldn't wear glasses). 3. The possible skeletal issues that can come with Goldenhar caught up with Kennedy full-force. She was diagnosed with kyphosis and scoliosis of the spine, as well as the beginning stages of Thoracic Insufficiency Syndrome (her left rib cage not growing properly and starting to squeeze her lung and heart).
- Age 5 was another rough year. We reached a life or death point in our journey. Her rib cage was not growing, her lung and heart could not work properly. She was fighting major fatigue and numerous battles with pneumonia. Her heart was getting weaker. We had no choice, it was back to the OR. Kennedy became the first person in the state to receive the VEPTR, a titanium rib, to correct her scoliosis and to stretch her rib cage. Two VEPTRs were placed and she was kept on life support for three days to control pain. When they tried to take her off, she crashed and we watched her die in front of us. That image will remain with me forever. Luckily, we also watched her be brought back to life. Six more days on life support. Then learning how to eat again, talk again, walk again. Not to mention the serious drug withdrawal that she had to go through, like that of a serious heroin addict, due to all the sedation drugs. Then one of the titanium ribs broke off a piece of her spine so it was back to the OR for a fix. When it broke a second time, the second VEPTR was removed in yet another surgery. Almost a month later, we finally returned home to recover enough to start kindergarten. Unfortunately, we had started to battle sleep apnea by this time and by the end of age 5, we were making another life or death decision. Back to the OR for a T&A. A simple surgery? Never. Within 24 hours, Kennedy's lung had collapsed and she was once again on life support. This time for a week, and with a strep pneumonia infection to boot.
- For the next two plus years, Kennedy would battle constant sinus infections, usually on a monthly basis. Now, sinus infections had been an issue since birth due to her very small and closed off sinus cavities, but this was ridiculous. So off we went in search of answers. By age 8, an immunologist/allergist finally figured out that the strep pneumonia infection had killed off every strep-pneumonia antibody in her body...and those antibodies are needed to fight off sinus infections. With one shot, we went from 12-15 sinus infections per year down to about two. What a relief!! In addition to battling the sinus infections, Kennedy also had multiple surgeries over these years to expand the VEPTR, and therefore her rib cage. Her heart and lung finally having room to work properly, she kept on keeping on.
- Age 8 led us to our first elective surgery...YIKES! Talk about a nerve-wracking experience. At this point, we knew that it was extremely hard to intubate her. We knew it was equally hard to extubate her. We knew she was highly allergic to all tape and adhesive used during the surgery process and would have extreme allergic reactions. We knew any kind of surgery could go awry at any time for any reason. But we did it anyway. This time, to implant a titanium screw in her skull in order to receive a BAHA (bone-anchored hearing aid). Instead of hearing microphone-quality sound, she would be able to hear everything crystal clear via the technology of vibration. As much as I hated making the decision to have this surgery, it was by far the best decision I've made to date regarding Kennedy! :). Age 8 also brought us to our first ear reconstruction surgery. Unfortunately, an awful infection set in and ate through all the rib cartilage that was implanted to frame the new ear. That was our rock-bottom point.
- Kennedy spent the rest of age 8 and some of age 9 healing both physically and emotionally from the failed reconstruction. We decided to try, try again. Three surgeries later, the new ear (Take 2) had to be removed in order to win the battle against a severe and dangerous MRSA infection. Ten days in the hospital, we left without an ear, again. As we were reeling from yet more disappointment, we received some good news/bad news on the rib cage front. Her rib cage was FINALLY growing on its own!!! So it was time to remove the VEPTR hardware (picture below)...which meant another surgery. But no matter, we were excited to get that metal out of her body!!!
- Things seemed to be going so well that Kennedy decided that she wanted to try the prosthetic ear route. So age 10 took her back to the OR a couple of times, for the implantation of titanium posts for the new ear.
- And that brings us to age 11, which Kennedy is wrapping up in the next couple of months. We kicked off age 11 celebrating that we wouldn't see an OR this year and praying we wouldn't land a stay in the hospital. Kennedy received her ear last summer and is happy that part of her journey has ended. She loves it, as well as the fact that she can choose when or when not to wear it. And we've managed to stay out of the hospital (knock on wood!!).
I would like to say that we're done, that the journey is over. That the rest of her years can be as easy as 11 has been. Although we've come to the end of some paths, there are still paths of the journey to travel. She has several more surgeries still out there on the table: Smile surgery to fix her facial paralysis (if Kennedy chooses), neck surgery (she has a lot of neck issues due to syndrome), spinal fusion (this is the scariest by far!), jaw surgery (which we're trying to avoid forever if we can), and orthodontic surgery of the lower jaw (just, ouch). And she will always endure hearing issues, sight issues, speech issues, back pain, skin infections around her surgery sites, skeletal issues, not to mention the special precautions she will always have to take to protect her one kidney. And the unsettling thing with craniofacial syndromes is...you never know when something new will manifest. So we keep living, praying that other shoe doesn't drop.
It isn't what Kennedy has gone through that makes her my hero, my champion. But rather her courage, her strength, her grace that she exudes while going through life. Hers hasn't been easy at times, but never -not once - has she complained. She just keeps living, she does what she needs to do, she ignores the stares and whispers that her syndrome often cause, she continues to forge ahead creating her own path through life. She does it with spunk and attitude, with a smile on her face, as a happy child.
She is my inspiration. My hope is that she will inspire others as she makes her way down this new path of her journey. Because truly, she is a Champion.
