The Rollercoaster That Is Having a Baby with “Special Needs.” Part 2

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The ups and downs of having a baby with physical delays and living in fear that those delays might affect developmental milestones in the future.

Part 2

By: Theresa Odgers

I walked up to the front desk with Landon in his carrier cradled in my left arm. I took a moment to look around the room. Anxiety set in. I took note of the exercise balls, stretching equipment, and of course the people. All the people were adults. Many of them were older adults. I was overwhelmed with the thought of my five-week old baby receiving physical therapy services. I checked in with the lady at the desk, who smiled and asked us to have a seat and informed us our Physical Therapist would be with us shortly.

Thoughts raced through my mind as I sat, waiting patiently for Landon to begin his session. What exactly was the therapist going to do with his neck? Will he be able to make it through the whole session without crying? Will my baby be in pain? Why is my child “broken”? Sadness and anxiety began to consume my thoughts. These negative thoughts were quickly dismissed when I met Landon’s Physical Therapist, Liz.

Liz laid a blanket down and carefully placed Landon on top of it. She stretched his little neck to the right and to the left. I watched Liz closely so I could mimic her actions and perform the stretches on Landon at home. She was teaching me how to do sets of stretches with Landon every day at home. She stressed the importance of tummy time. She provided more information about torticollis. When the session ended, I felt relieved and much more informed about Landon’s diagnosis. Liz wanted to work with Landon two to three times a week, so I scheduled another appointment on my way out the door.

Later that same week Landon had an appointment to have his ears re-evaluated at Children’s Hospital of Philadelphia, CHOP, since he failed the hearing test on his left ear at birth. The audiologist performed her tests and gave us the and devastating news that Landon had severe hearing loss in his right ear, and moderate hearing loss in his left ear. Tears streamed down my face as I realized I had a hearing impaired baby. My biggest fear of having a child with special needs was becoming a reality. My baby couldn’t turn his head and couldn’t hear. My baby was broken. My mind started to wonder if there was more wrong with Landon. I lost it.

Google became my new best friend and my new best enemy. I Googled the causes of hearing loss in infants. I Googled torticollis and low muscle tone. I started to diagnose Landon with every disability I could find. I was trying to be the doctor and figure out what was wrong with my baby. Anxiety consumed me.

An appointment was scheduled in early August to meet with an ear, nose, and throat specialist at CHOP. We were told Landon had significant levels of fluid in both ears and we would be unable to receive an accurate assessment of his hearing loss until the fluid was drained. We were told to wait two months to give the fluid in his ears a chance to dry. The doctor sensed my anxiety and told me Landon was too small for surgery to insert tubes to drain the fluid. He looked me in the eyes with sincerity and said, “There is nothing you can do right now but enjoy your baby.”

I realized at that point that I had not been enjoying my baby. I had been so overwhelmed with being a new mom and so stressed with all the issues that had been popping up with Landon that I never enjoyed him during his first two months of life. I promised myself, and Landon, that I would no longer Google. I would no longer try to find other things wrong with my baby. I would stop trying to be a doctor and diagnosing my baby. I would be a mother and love and enjoy my son.

I continued Physical Therapy with Liz until the end of August when I was told our 60 sessions that were covered by insurance were completed. Landon showed some progress in rotating his neck, but not enough to discontinue Physical Therapy. She suggested I call to have Landon evaluated by Early Intervention, a program designed by the state to assist families with children with developmental needs. I immediately went home and dialed the phone number to start the process of being evaluated.

I was determined to fix my baby and that phone call was the smartest decision I have made so far as a parent.

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