My husband and I feel very lucky to feel that we are able to accomplish most anything when we set our minds to it. We decided to marry in 2002 and start our family of four kids soon after. We did exactly that and we had our first child in 2004. I left my career as a special education teacher when our first child was born and we were blessed enough to expect our second child in 2006.
The pregnancy was seemingly healthy and normal. The only concern was that he was beginning to be quite a big boy and since his grandfather was 13 pounds at birth, we kept a close watch on that. Towards the last month, I noticed that baby Noah, a pretty laid back little guy, started to move less and less. We had a few non-stress tests in which he was less responsive than the doctor preferred to see, but there were no glaring concerns. However, the doctor decided the non-stress test coupled with the concern for Noah’s size was enough to decide to induce him a little early.
A Few Concerns Leads to Induction Day
Being induced was quite a bit different than when we had our first baby. Each night I remember going to bed in the last days of my first pregnancy asking myself “Is this it? Is this the night we will have our baby?” but with Noah, there was no ambiguity. I knew that we would go to sleep Friday night, wake up Saturday morning and welcome our baby. We went to the hospital well rested that early morning, and excitedly checked in. We preferred a more natural approach, so my doctor agreed to break my water in an attempt to jump-start labor. After four strong contractions, we thought we were on our way… until the contractions came to a stop. So from 9 am until 5 pm, our doctor allowed me to try to augment naturally until finally, she dropped the “P-bomb”. Yep– Pitocin was needed to speed up my labor.
I didn’t really progress quickly with my first so I told my family and friends who were waiting to leave for dinner. After all, I was in labor for 36 plus hours with our first as she, just like Noah, preferred the occipital-posterior position, fondly known as sunny side up. I had to push for three and a half hours so this seemed totally logical to have everyone leave, right? Wrong. Shortly after they all left, the nurse came in to check on me and asked how I was doing. I announced to her that I was great but the baby must have moved and perhaps he was on a nerve because he was now putting pressure on my rumpus. This is apparently the universal code for ABOUT READY TO DELIVER ANY MINUTE.
We called everyone back quickly and we were ready for business. The doctor sat down and I asked if I should push since I was contracting. She said I could and had one hand in “birth-ready” position and another setting up tools until she abruptly spun around and had both hands engaged in a catching position. I was still anticipating a more than three-hour delivery saga. All of a sudden I was pushing a second time and on my third push, she held up what looked to be a baby. My head was spinning. I asked aloud “was that the baby… the whole baby? Did I just have the baby?” WOW. I was shocked – it happened in a blink of an eye- how marvelous!!!! They handed the sweet little man to me and I was over the moon and then suddenly my whole life changed in one small, graceful movement of my hand as I gently cupped it around my newborn son’s delicate little head and made a heart-wrenching discovery… he was missing an external ear.
Time Stops on the Road to a Diagnosis
Contrary to the blur of frenzy with the quick delivery, the next five minutes were a blur in an entirely different way. They seemed to creep by with the most stifling slowness as I watched my husband and mother-in-law walk with the nurse to another part of the room with Noah, all examining him with questioning eyes. All I could hear in my mind was the echo of my last words ringing in the air, “He is missing an ear… I think he doesn’t have an ear.” I heard the reassurance of the doctor saying “Oh it is fine. It is probably folded down from his birthing position; it happens all of the time.” She meant well and believed it just as I wanted to. I couldn’t believe though because I knew that wasn’t true. I felt it and watched it in my husband’s eyes as he just looked down on our little angel wondering, as I did, “how could this happen?”
The next few hours were painful as we waited for information. Noah seemed to check out alright physically but no one could tell us anything so we waited. A doctor finally came in at our persistent requests and ordered tests but didn’t indicate to us what these were for. We entered into the longest, most horrific night of our lives.
At 6 a.m., they came in and took our little innocent baby and did an x-ray, shortly after an ultrasound and finally an MRI. There is something so wrong about having to watch your newborn, not even a day old, in that machine undergoing diagnostic testing that many go a lifetime without. Finally, our pediatrician came in to see him. He walked in like a brave knight rides in on his horse and told us the things we so dearly wanted to hear- ANSWERS.
The Unknown has a Name: Goldenhar Syndrome
Armed with literature, he shared that our son has a syndrome, Goldenhar Syndrome, and that it is a clinical diagnosis and has varying characteristics. He described a facial asymmetry of Noah’s in an underdeveloped jaw bone and torticollis. He has microtia, a missing external ear. He said that Noah appeared to have been spared other trademark characteristics such as spinal fusion, missing or malformed kidneys and growths on or abnormalities of the eye. Hence the x-ray, ultrasound, and MRI.
I had held my angel all night and wondered… is this really happening? We both feared the unknown but once we knew what we were up against we felt we could handle it — all of it. We were going to face it all and raise this amazing little boy. We didn’t know yet how all this impacted him, and some areas we learned about much later as he hit or missed developmental milestones. We quickly learned that Noah was the important force, not any of his labels. He was our exceptional little boy.
I mentioned earlier that I was a special education teacher, with half of my credits towards an Early Childhood Special Education endorsement, all but one class in my Severe Affective Endorsement all on a Moderate Needs Special Education Masters that I hold… but none of that covers Deaf Education. So I have armed myself these last three years with all of the knowledge I can find to help guide Noah in his journey. The greatest thing that has helped us was connecting with agencies such as CHIP and Foothills Gateway to receive support and services for Noah. He has had physical therapy and speech therapy since he was three months old. We have been so grateful to have these resources and connections to assist Noah and our family as we feel they have a critical role in his success to date.
By the time he was three, he was amazingly skilled in fine motor skills but was behind in gross motor skills. With his severe to profound hearing loss in his right ear (or “little ear”) and normal hearing in his left ear, he used a bone conduction hearing device on his hat, and he still loves it, most of the time. We had believed he had a heart murmur but learned that it is really a VSD, which is a hole in his heart. We continue to monitor his vision and many other facets of his health and he will have to as he grows older. He decided in his late elementary years to ask us to look into reconstructive surgery for his little ear, and that was quite a journey. My husband and I feel fortunate to feel that we can accomplish anything if we set our minds to it. Noah has been through many surgeries and reconstructions in his lifetime. We are constantly grateful for the remarkable son. We don’t see him so much as the little boy with Goldenhar Syndrome but instead as a charming, adorable, tenacious, determined, funny, thoughtful and bright young man that we know will be even more amazing as he grows.
“Children are not things to be molded, but are people to be unfolded.” ~Jess Lair