Make A Child Smile

Logan's Story
written by mom Natalie

Logan and his brother Owen, are two very interesting, miraculous little boys. They are identical, monochorionic/monoamniotic twins, meaning they shared the same chorion and amniotic sacs. The boys were no more than three days away for being conjoined twins.

During our second ultrasound in April 2003 (April Fool's Day, no less), we learned "Baby A" had a congenital heart defect and "Baby B" had Duodenal Atresia (tummy and intestines not connected). Our doctor told us each of these defects was often associated with Down's Syndrome and since they were identical, if one had it, they both would. After an amnio and a FISH analysis, we learned their chromosomes were intact. That was the first of many miracles.

At our fetal echo appointment, we were informed that "Baby A" had a single ventricle heart and lots of other things that meant nothing to us at the time. We asked the doctor to tell us on a scale of A-Z the severity of "Baby's A's" heart. She replied a W, but a fixable W with likely three surgeries—the first within hours or days after birth.

The boys were born at 35 weeks without complications during a scheduled c-section on June 23rd, 2003. "Baby A" was Logan Thomas and "Baby B" was Owen Paul. After the boys were born we learned that Logan was born with Heterotaxy Syndrome meaning the right side of his body duplicated itself, thus the single ventricle heart and no spleen (important for fighting infections). We also learned Owen was born with a Hypoplastic right thumb, virtually a bum thumb that was there but couldn’t move, as well as an imperforated anus — or lack of a pooper shooter as we preferred to say.

Logan’s first heart surgery was the Glenn procedure in October 2003. It went well and we were home after 10 days. Complications took us back to the hospital where we spent another three weeks. At first the doctors felt it was a reaction to a medication but we ultimately learned his intestines were malrotated due to his Heterotaxy. We urgently had the LADD procedure done and were home about 2 weeks later.

His brother Owen’s first surgery happened four hours after he was born to attach the tummy and intestines and create a colostomy for him since he lacked a pooper shooter. His next big surgery was in December 2003 to create a pooper shooter. In March 2004, he had his colostomy take down and has been pooping like a normal kid ever since. His final surgery was in August 2004 when the removed his bum thumb and turned his index finger into his new thumb. He was in a cast for eight weeks but uses his hand just like any other kid—for hugs and throwing balls, riding bikes and swinging swords.

Following Logan’s Glenn and LADD procedure, things were pretty smooth until April 3, 2004—almost a year to the day of our initial life changing news. We were headed to a wedding reception out of town and Logan was crying hysterically in the car. We ended up taking him to the ER in our small hometown where he was diagnosed with a double ear infection. It turned out that supposed double ear infection was actually a gastric volvulus, meaning his tummy twisted up (usually happens only to dogs!). This happened to Logan, again because of his Heterotaxy; because he didn’t have a spleen, nothing was there to keep his tummy intact. As a result, yet another emergency surgery was performed to untwist his tummy. Unfortunately, during our stay, one of Logan’s femoral lines developed a staph infection, which resulted in bacterial meningitis. We learned then and there, how important a spleen is. Logan was literally within hours of death and suffered two seizures as a result of the meningitis. Miraculously, once again, Logan recovered completely after 25+ days in the hospital.

From May 2004-January 2006, we all lived happily and for the most part were healthy. Logan had bouts of pneumonia here and there requiring occasional hospital stays and once had a crazy bacterial infection of some sort—a white blood count of 46,000—which required the strongest antibiotics and a 10 day hospital stay but our life changed again in late January 2006 when Logan got RSV and subsequent lung and double lung pneumonia. It took 13 weeks and three weekend hospital stays for everything to clear up at the beginning of May. This was all happening as we were looking ahead to Logan’s final heart surgery, the Fontan, which was scheduled for June. We made the decision to postpone to November so Logan could fully heal and enjoy the summer.

Logan had his Fontan heart surgery on November 2nd, 2006. He is still recovering and after 24 days in the Pediatric Intensive Care Unit, he was finally moved to the general pediatrics floor on November 25th. While the Fontan itself was a success, Logan suffered many complications including liver failure, kidney failure requiring seven days of hemo dialysis, SVT or sinus ventricular tachycardia where his heart rate raced at 270+ beats a minute, and multiple allergic reactions to various tapes and drugs. While these things have all grossly improved, Logan is now dealing with ICU psychosis or delirium. He’s stopped talking and communicating, has major panic attacks and has ultimately retreated to a place within himself that seems safer than being a part of the day-to-day reality of his world. We are seeing signs of hope and are constantly reassured by doctors, nurses and other families that this too shall pass.

Since their blessed arrival in 2003, Logan and Owen together have endured 17 surgeries. While some have been minor like hernia repairs, the majority has been whoppers and yet we daily feel blessed for all of the miracles we’ve seen and continue to see with our boys. The joy and sheer delight they bring to us, their family and friends and strangers is truly a gift from our good God above.