Hi! My name is Cohen Parker. Before I was born, my Mommy and Daddy found out that something was wrong with my heart. For this reason, Monroe Carrell Jr. Children’s Hospital, Vanderbilt, in Nashville Tennessee was the best place for me to be born.
On July 14th, 2016, I made my appearance, with a rare form of congenital heart disease, called Double Outlet Right Ventricle, Ventricular Septal Defect, and Severe Pulmonary Stenosis. DORV is a malformation where the heart’s two major arteries, the pulmonary artery and the aorta both connect to the right ventricle. VSD is a hole in the septum or tissue wall that separates the right and left ventricles. This condition causes the heart to work harder to pump oxygen into the body. Pulmonary Stenosis also causes the body to work harder trying to get blood through the pulmonary valve. These conditions would require me to undergo open heart surgery a few months later.
When I was just a month old, my family received another blow when it was discovered my soft spots or the bones of my skull had closed prematurely. This is called craniosynostosis and shockingly my daddy had the same condition when he was a baby. It’s important that the soft spots remain open to allow the brain to grow properly. When they close early this could cause issues, such as intracranial pressure, developmental delays, and cognitive impairment. I would require a separate surgery for this after my heart surgery.
Within my first 2 months of life, I would have yet another problem. I was unable to keep my milk down and I was vomiting up mucus and stomach acid all the time. I was diagnosed with a digestive disorder, called Gastroparesis; where the stomach cannot process/digest food properly. For this reason, I was fitted with a feeding tube and placed on 24-hour or around the clock feedings to ensure I had the nutrients I needed to survive.
On November 2nd, 2017 I underwent open heart surgery to repair the DORV-VSD and PS. The doctors had wanted to wait until I was strong enough, but my heart had worked as hard as it could, and surgery was now imminent. The doctors repaired as much as they could. It wasn’t perfect, but it was a lot better than before. My mommy and daddy and my whole family were shocked by all the tubes and wires coming out of my little body. I was in the PICU for several days, but soon I was on the road to recovery.
Over the next few months, I struggled with weight gain and food intake; I vomited many times a day. The doctors decided to place a jejunum tube in my stomach, instead of the feeding tube in my nose. In January 2017 I had surgery to place the jejunum tube in my stomach.
Everyone was able to see my sweet little face, without a tube down my nose. I dare say I was quite the apple of mommy’s eyes and my daddy’s little bear.
When I was almost 8 months old, as my family and I prepared for my next surgery my neurologist advised us that I had some fluid on my brain. My family and I packed our bags and headed to Nashville for my cranial-surgery, on March 7th, 2017. During surgery, the neurologist made an incision in my head, from just above my left ear across to my right ear. He then removed pieces of my skull and cut slits in them. This opened my skull to allow my brain room to grow. Hopefully, this surgery was done in time to avoid any damage or major issues to my brain.
Well, the jejunum tube wasn’t the answer to my stomach issues. I still vomited and wasn’t gaining weight and required additional stomach surgeries over the next year. I don’t eat or drink as most 19-month old’s do and well, I have a pretty bad aversion to almost anything being placed in my mouth.
Here we go again. A few weeks ago, my family and I received some upsetting news. I had an appointment with my Ophthalmologist. It was discovered that my optic nerves had started to swell and become crowded, which resulted from fluid and pressure on my brain. My Ophthalmologist immediately contacted my neurologist who did my cranial-surgery last March. I already had a checkup with my Cardiologist at Vanderbilt, so I went to see my neurologist too. He told us that my top sutures were completely shut again, and my frontal sutures were barely open. This had compressed my brain and put pressure on the nerves. We were told I needed cranial-surgery very soon.
Before I could have the cranial-surgery I needed to have surgery to replace my jejunum tube. I had this done within days and now my family and I are waiting for my next cranial-surgery. This will take place on March 13th, at Monroe Carrell Jr. Children’s Hospital at Vanderbilt.
Although we have been through this once, I am older now and unfortunately, with all of the medical conditions and resulting doctor’s appointments I have begun to show signs of severe anxiety. Each time I go to a doctor’s office or hospital I become distraught and inconsolable. I am just a little boy and I don’t understand why I have to go through all of this. The stress is hard on my family, too. It’s hard for mommy and daddy to see me so upset. So, please keep me and my family in your prayers as we head down this road again. I have the greatest Prayer Warriors in the world and each of your prayers is appreciated more than you will ever know.
#cohenstrong
*Select photos by Sherry Spangler Photography
#cohenstrong 