Support the Headrick family with medical expenses

Parker Headrick was born on July 30, 2019. He was a seemingly healthy baby boy, weighing in at 7lbs 6ozs and 19 inches. We noticed early on he had a lot of choking while feeding and snoring while he slept. On November 7, 2019, he was diagnosed with Laryngomalacia (LM) by the ENT, LM is a congenital softening of the tissues of the larynx (voice box). Parker’s symptoms rapidly worsened. In addition to choking and breathing, he would pause breathing in his sleep and his lips would turn blue during episodes of choking. On December 16, 2019, he had his first surgery, called Supraglottoplasty. This is a microscopic procedure to change the structure of the upper larynx. He stayed in the hospital overnight. From this point on he continued with feeding difficulties (dysphagia), snoring and pausing in his sleep, and blue spells during dysphagia. He was considered a high-risk airway patient, so when COVID hit he had to be kept at home and away from other people.

On August 26, 2020, after many attempts to thicken his liquids so that he could safely swallow them, he had a g-tube placed for hydration purposes (and nutrition if necessary), an MRI to check for Chiari Malformation/brain abnormalities, and a scope to check his larynx. The MRI did not show Chiari Malformation/brain abnormalities and his larynx looked perfect. This left us with no explanation as to why he was continuing to choke. Parker began using his g-tube for hydration and nutrition. On February 25, 2021, Parker had his tonsils and adenoids removed and his larynx was checked again. His LM looked stable, and no revision was needed. In October 2021, Parker started complaining of “ants biting” him on his feet. Over the next 3-4 months these sensations increased to his legs, hands, and arms. He saw the neurologist who started treating him for neuropathy. On December 23, 2021, we took our first trip to MUSC to see a GI to manage his g-tube and some GI symptoms he was having. In July 2022, the neurologist ordered a nerve conduction study to confirm if Parker had neuropathy, that was done in January 2023, and it came back negative for neuropathy. At that point we pushed for a spine MRI to check for tethered cord syndrome, we noticed parker was having loss of bowel and bladder control and he was beginning to get sick a lot. His GI sent him to an immunologist in March 2023, through bloodwork she found out that he had built no immunity to the Prevnar 13 vaccine given as a baby. She ordered the Pneumovax vaccine to be given. He was unable to get this vaccine until June 2023 because he kept getting respiratory viruses (which ultimately led to development of pneumonia in May 2023).

On June 30, 2023, Parker had his Lumbar MRI. During the MRI the tech saw a Syrinx (a fluid-filled cyst that forms within the spinal cord), so he decided to do an entire spinal and brain MRI. What was found was a 3mm herniation of the cerebellar tonsils (Chiari Malformation type 1) and the syrinx at T6-T10 that was 4mm wide at T7 (widest point). From here we were immediately referred to Neurosurgery at MUSC.

On July 17, 2023, we traveled to MUSC in Charleston and Parker was officially diagnosed with Chriari I Malformation with crowding of posterior foramen magnum, some brainstem compression, and Thoracic Syrinx. On August 8, 2023, Parker underwent a Bone Decompression surgery. The surgeons made a 3-4 inch incision into the back of his head and neck. They removed 1-2cm of the base of his skull, removed his C1, and released 2 ligaments. During the surgery, the surgeons found a bone spur growing off of his C1 and putting pressure on the spinal column.

The point of bone decompression surgery is to mainly rely on the child’s future growth to create room for the cerebellar tonsils to go back into the skull and relieve the pressure they are putting on the brain stem and to restore CSF flow to allow the syrinx to no longer grow (possibly shrink). His journey with Chiari Malformation is far from over. Parker is having near daily headaches, nausea, and light sensitivity. We still see a decrease in fine motor skills, and he has not regained much bladder control and no increase in bowel control. Chiari Malformation can never be cured, but the symptoms can be controlled. In 3 months, around November 2023 we will travel back to MUSC for a follow up MRI, this will tell if there has been any growth. There is always a chance that this surgery wasn’t enough, if that’s the case Parker will go back for a Duraplasty (this a more extensive decompression surgery).

Despite all of this, Parker is a happy 4-year-old boy. He is a wonderful little brother to a 13-year-old brother and 9-year-old sister, and he is an amazing big brother to a 2-year-old brother with autism. He is a loving child who is ready to make it to spring 2024 so he can play more t-ball and (most importantly) he can’t wait to recover enough to attend his K-4 class that he’s been missing since having surgery.