Admiring Our Maggie

By Elizabeth Cadkin, Colorado H&V

Our daughter Maggie was born on a beautiful October day. She had a huge head of dark hair and the skeptical look of a newborn.

From the first moment I held her, I noticed her facial differences. Maggie’s left ear was shaped like a cup, with a tiny canal and ear tags. She had a lateral cleft lip and her jaw was smaller on the left side. Reassuring faces beamed down on us, yet a deep fear washed over me.

When the nurse weighed and measured her, I asked, “What’s going on with her ear?” The nurse quickly replied, “Oh, just some skin tags; it’s no big deal.” But I knew it was something more.

I hovered during the newborn hearing screening, worrying. The technician tested Maggie’s right ear (the ear with no visible difference) and she passed! I was relieved. However, the technician didn’t even test the left ear, saying the results may be unreliable. 

We spent the following weeks getting to know Maggie and introducing her to her big brother, John. I’d say her name from across the room and she would turn to look. We agreed…perfect hearing! There were challenges, but we were determined to overcome them.

One month after Maggie was born, we met with the Craniofacial team at Children’s Hospital Colorado. They diagnosed Maggie with Goldenhar Syndrome, a rare disease that can impact eyes, ears, jaw, spine, kidneys, and heart. The diagnosis was a starting point. There would be many more appointments to determine how the syndrome uniquely influenced Maggie’s development. I insisted on a hearing test as soon as possible.

The next day, Maggie had an Auditory Brainstem Response test (ABR). Our audiologist said Maggie had moderate conductive hearing loss in both ears. My husband and I cried–this new development was so unexpected. We went into the appointment optimistic and left feeling defeated. We tested again two weeks later and the loss in the left ear was confirmed, but the right ear was normal. We were ecstatic. On New Year’s Eve, at three months old, Maggie was fitted with a Ponto 4, a bone-anchored hearing aid.

Over the next few months, we learned more about Maggie’s condition. She had a small heart defect that would (and did) repair itself. She also has congenital scoliosis. There is nothing we can do for scoliosis right now other than keeping her active. We must wait and see how Maggie develops. I worry about her living in pain as she grows older.

At four months, Maggie had surgery to repair the lateral cleft lip, remove ear tags, and place ear tubes. Prior to the procedure, we would squeeze Maggie’s lips together when she drank a bottle. Still, much of the milk dribbled down her chin. Maggie fatigued quickly during feedings and it wasn’t unusual for her to drink less than 10 ounces a day. After surgery, she drank milk like a champ and quickly gained weight and energy. With her newfound energy, we started meeting with speech, physical, and occupational therapists through Early Intervention. It’s impossible to imagine her where she is today without their support.

At fourteen months, Maggie’s tonsils were removed to improve sleep apnea. After the procedure, Maggie struggled with breathing. Her oxygen levels dropped throughout the day and the ICU Rapid Response team soon swarmed her room. I caught a glimpse of Maggie through the sea of providers, grey and lifeless. A few moments later an alarm rang to indicate a code blue on the floor. It was for Maggie! I lost my mind. I ran down the hall screaming. For a full five minutes, I thought Maggie was gone. She wasn’t. Maggie did stop breathing, but the fast-acting providers resuscitated her and moved her to the ICU. Those were the hardest minutes of my life.

Maggie had further complications, so we stayed at the hospital for nine days, much longer than expected. One evening, I noticed a tinge of blood in her urine. Hours later, a urine sample was collected. Even later, Maggie woke up screaming, sweating, and flushed with a 103-degree fever. We spoke with the doctor, and he confirmed the sample showed an infection. However, before he prescribed an antibiotic, he wanted a blood sample to target the specific bacteria.

Anyone who saw Maggie at that moment would know something was terribly wrong. My husband demanded escalation. Again, the ICU Rapid Response team took action. Immediately, Maggie was administered a broad-spectrum antibiotic. Blood tests confirmed the infection had progressed into a blood infection. We were lucky that it had not yet turned septic. Needless to say, the folks on the Rapid Response Team are my heroes.

Throughout this journey, I have been so proud of my husband. His actions that day taught me the importance of fierce parental advocacy. No matter how many credentials someone holds, we know our children best and should always trust our gut.

Now that Maggie’s almost two, she loves to accessorize. Every morning she insists on a necklace and a bow (in fact, her first word was bow). Accessorizing has helped Maggie embrace the Ponto. She is happier and more engaged when she wears the device. Of course, no one knows what it is, and more than once someone has asked if the Ponto is a headlamp. We educate those people who look confused or ask questions. We joke that when Maggie started wearing a helmet for plagiocephaly and a harness for hip dysplasia that she looked like the cutest cave explorer ever.

Maggie’s journey isn’t typical, but she’s not alone. There are many kids just like her, and parents just like us. Maggie is one-of-a-kind, and her fan base grows daily. I used to feel an immense sense of guilt. I convinced myself I caused Maggie’s condition. Today, I feel tremendous pride. I deeply admire her sweetness, joy, and conviction. Maggie is exactly who she’s meant to be (with the exception of being a big-time daddy’s girl.) Her story is just beginning.   ~

Editor’s note: Cadkin serves as an Ambassador with the Colorado Chapter.

H&V Communicator – Fall 2021