CDH Clubhouse - Congenital Diaphragmatic Hernia Support Group hosted by CDH International - Blogs

Originally Posted by Brooke Beecham

Hello everyone!

My name is Kristen (Wilson) Beecham but I go by Brooke. I learned to introduce myself that exact way when I was 2.5 years old!

I am a survivor of a LCDH (I was a "complete" herniation, kidney's spleen,liver,intestines,and stomach). My left lung was severely compromised and had not formed past being the literal size of a half dollar. My heart was completely pushed to the right. My spine had formed around those organs compromising my right lung and heart. I was on the "old school" ventilator and oxygen at 100% for oxygen and breathe intake (for only 11 days, yeah unbelievable right?). I was rushed to Jackson MS University hospital after birth and had my repair surgery at 9 hours old. God defied all statistics and research when he showed up in my life. I was given a "less than 0% chance" by my doctors and nurses. One even said "I wouldn't have given spit for her life." I had another surgery at 3 weeks old to fix the malrotation in my intestines and an intestinal kink that happened during my repair surgery. I came home at 5 weeks old. I was diagnosed with failure to thrive at 6 months old (I weighed 9lbs), hiatal hernia, and a "signifiacant" thoracic scoliosis. I had double pneumonia at 1. and chronic upper respiritory infections, ear infections, and severe GERD. When I was 6ish I was fitted with my first "Milwaukee" back brace (I ended up being fitted with 2 different styles). In 1998 my orthopedic surgeon decided that wearing my brace 23 hours a day was not doing any good so he discontinued treatment and we waited for my growth plates to be enough that I could have a correction surgery. In 2001 I was diagnosed with "Barrett's esophagus" and it was determined that only oral medicine was not doing it's job. I was then sent to Vanderbilt for surgery. In 2013 it was determined my reproductive organs were too far gone to salvage. In May of 2014 I began a rapid decline in my weight and physical health. In Nov I was told not to drive, be alone, be alone with my kids, or "excite" myself at all because I was likely suffering from an adrenal gland, pituitary gland, or liver tumor. (my blood glucose was too unstable, dropping to 22 and 27ish during the day multiple times, and my mental stability was not a constant) By December I had lost in excess of 30 lbs since May, I had lost all problem solving ability and mental awareness. I lost entire days of my memory. I couldn't remember my address, birthday, medical history, or my children's pertinent information. I was unable to have a complete conversation, take care of my self, eat, or think. My personality was gone, my "thrive" was gone, I had no sense of humor, my intelligence, independence, and self confidence was GONE. By Dec 17th I weighed 84 lbs, and could no longer maintain consistent concentration and coherency. I was unable to make decisions, or even sit upright for long. I was at a hospital for an imaging study, it was unsuccessful. I was later that day put into the hospital with a diagnosis of failure to thrive, severe malnutrition, BMI less than 16, mental instability, fatigue, serious potassium deficiency, and dehydration. A midline was started in the beginning to begin clinamix and fluids. A central line was placed 2 days after admission when their PICC nurse was there, then they started 24 hour TPN. I had several procedures and they finally came to a diagnosis of marked gastropareisis due to vagal nerve trauma during my numerous abdominal surgeries. Dec 29th I had my tube placement and when home on Dec 31st. HAPPY NEW YEAR!! My family and I celebrated Christmas in the hospital and it is our most memorable, happiest, most grateful Christmas yet!

I have had several additional major surgeries. Scoliosis correction (spinal fusion) surgery in 2000 to correct my 65 degree thoracic curve. In 2001, an open nissen fundoplycation and hiatal hernia repair. In 2001 (Dec), a thoracic plasti and "screw tightening" back surgery to attempt to correct my "hump" and to give my right lung some additional room, (they removed 6 inches from 6 ribs). In 2002 I had my second nissen fundoplycation because the first "came undone". In 2005, endometriosis adhesion removal surgery. In 2007, I had the rods removed from my initial spinal fusion in 2000 (a car accident had caused a screw to break loose and cause lots of nerve damage). In 2009 and 2010, I had additional endometriosis and reproductive organ repair. In 2011, I had emergency bowel obstruction repair and lysis of abdominal adhesions. in 2013, I had a complete radical hysterectomy, In 2014, I had an open GJ tube insertion. 2015, I have had 5 GJ tube replacements.