Jaxson’s Journey

By Christine De La Rosa, Jaxson’s Mother

On February 7, 2016, my son Jaxson decided he would enter this world. It was Super Bowl Sunday. When he was born the doctors and nurses asked me, “Did you know he was only four pounds?” I was in shock and had no idea he was so little.  

The doctor and nurses were talking while they examined him and told me they were going to take him to the NICU. His oxygen level was low. They also told me about his bilateral microtia which means both ears did not form on the outside and that he had a soft cleft palate. I don’t remember how I felt at that moment because it was all too much to take in.

I asked my doctor how this happened because I had two screenings for abnormalities done while I was pregnant and the results were negative each time. The doctor seemed to be in shock and only answered, “I don’t know.”

After meeting several specialists, the genetics doctor told me my son might have a syndrome but that he could not be sure until a DNA test was performed. It was all so overwhelming at that point. He was diagnosed with failure to thrive. Jaxson had to be fed differently because of his soft cleft palate, which put him at high risk for aspirating. He had his first surgery at 5 months to repair the cleft palate.  He was slowly gaining weight.

In November 2016, Dr. Scott McLean with the Genetics Clinic at The Children’s Hospital of San Antonio gave me the diagnosis: Cornelia de Lange Syndrome (CdLS).  When I asked Dr. McLean what I needed to do, he reassured me that I was already doing everything I could. Leading up to the diagnosis, the clinic staff had already provided great support and information about resources available for Jaxson. He was receiving speech, physical and occupational therapies, and seeing several specialists.

In May 2017, he came down with pneumonia because of his aspiration. The doctors recommended placing a feeding tube directly into his stomach. He had the procedure in June. That was the best decision I made for my son. His weight, motor skills, and overall health improved significantly.

He currently does not talk because of the microtia, but thanks to the hospital’s recommendations and resources, we became enrolled in the parent and infant program at the Sunshine Cottage when he was 3 months old.  He received a Bone-Anchored Hearing Aid or BAHA, since he is too young for a cochlear implant. When he turned 3, he was enrolled at the Preschool Program for Children with Disabilities at a San Antonio Independent School District elementary school. He will have future surgeries to reconstruct his ears and get cochlear implants when he is about 7 or 8 years old.

As a single mom, I often feel overwhelmed. I have a full-time job and an 11-year-old daughter. On my days off, I am usually taking Jaxson to an appointment. People ask me how I do it all and my response is, “I have to. It just comes to me.”  I have lot of support from my family.

Everything happens for a reason and God gave me Jaxson because he knew I was capable of handling his diagnosis.  He opened my eyes and my love for Jaxson is like no other.  His personality and character is so unique I am grateful every day that he is my son. 

I am on a CdLS Foundation group on Facebook, so I can say some moms have more on their shoulders then I do because this syndrome can be fatal.  Jaxson’s organs are all in good standing so I am beyond grateful and blessed that my son is healthy.

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