#thebeautifulsoulmovement | meet owie
In September of 2018, my family learned that my beautiful six year old daughter Ricki Nicole had an auto-immune disease called Alopecia Areata. Alopecia Areata is a disease that causes sudden hair loss with no cause, cure or treatment. My husband and I were scared, confused and desperate for answers. I searched high and low. Joined one too many Facebook groups. Saw too many Doctors. Got too many opinions. Here we are almost 9 months later and we have so much Faith in the Lord and know He has a plan in all of this. He wants her story to be told to help others because of her unavailing strength and courage. See, Ricki never once asked why. She never once became sad. She has even said that she loves having Alopecia because she loves that it makes her different. In my darkest moments I knew I needed light, I had to turn this into a positive, so that is when #thebeautifulsoulmovement project was born. During the endless searching one thing I was not able to find was other girls or boys who looked like Ricki. I wanted to ensure that if there ever comes a day that she feels different, ashamed or un-pretty she can simply search the hashtag #thebeautifulsoulmovement and see hundreds of other beautiful children just like her who although may appear to “look different” on the outside that they are incredibly beautiful too.
Owen was nominated to take part in #thebeautifulsoulmovement project by a past client of mine and in her description of Owie she said, “He lights up a room.” She nailed it. The minute I met Owie he walked right up to me and gave me a hug. I melted. He is sweet, loving and such a silly boy. He is a typical 3 year old who loves to laugh, play with rocks and loves his mommy and daddy. He is a warrior and one that I was so fortunate enough to be able to meet and spend a small amount of time with. I would love for you to read a little about his story sent to me by his beautiful mama, Devin.
When Owen was born in November 2015, he appeared to be a healthy, happy baby. However, doctors noticed a heart murmur and a mildly elevated direct bilirubin and advised his parents, Devin and Kyle, these could be normal issues due to his age, and to follow up with their pediatrician and a GI specialist within a month. In the meantime, they were sent home to begin their lives with baby Owen on Thanksgiving Day. But Owen’s mom had an unsettling feeling and booked an appointment with their pediatrician immediately upon discharge.
When the Fochler’s arrived at the pediatrician’s office, they were instructed to head straight to the hospital as Owen’s direct bilirubin had sky rocketed even further. While in-patient at Lutheran General Hospital many tests were conducted without much success and again, Devin and Kyle were told that these issues were likely to resolve on their own. For good measure, the physician’s decided to perform an abdominal MRI on the 3-day old baby Owen. After the MRI, it was noted that Owen had a right aortic arch indicating that there was something majorly wrong with his heart. With this news, the Fochler’s decided to transfer to Ann and Robert H. Lurie Children’s Hospital of Chicago.
At 5 days old Owen was diagnosed with a rare heart defect called tetralogy of Fallot (ToF), with pulmonary atresia (a missing heart valve between the pumping chamber of the heart and the lungs) and major aortopulmonary collateral arteries (small arteries that develop to supply blood to the lungs to compensate when pulmonary circulation is underdeveloped). As an additional blow, doctors identified the root cause of Owen’s climbing bilirubin levels to be Biliary Atresia, a deadly liver condition where there is the absence of bile ducts, quickly causing bile to get trapped within the liver resulting in damaging and scarring of the vital organ. There is no cure for this disease and ultimately must be treated with a Kasai procedure or liver transplantation. At three weeks old Owen underwent the Kasia procedure, an operation designed to retain and salvage the native liver, restore bile flow, and reduce the level of jaundice. This procedure is not considered a curative treatment but can help restore bile flow while relieving jaundice. The Fochler’s were discharged home one month after Owen was born for the first time ever.
In the coming months, even after the Kasia procedure, Owen’s liver progressively worsened and the family learned that Owen was desperately in need of a new liver. However, Owen’s extreme CHD made this impossible task even harder. To be a candidate for transplantation, one must have good heart function, something Owen did not have. In addition, the typical approach to repair his defect is a staged approach over many years. Unfortunately, the Fochler’s did not have this amount of time because his diseased liver was failing at an alarming rate. Luckily, the Fochler family learned of Dr. Frank Hanley, Chief Pediatric Cardiac Surgeon at Lucile Packard Children’s Hospital at Stanford. Dr. Hanley pioneered a procedure in which he repairs TET, PA, MAPCA’s in one marathon surgery with an amazing 98% success rate. Heading to California seemed to be Owen’s only hope.
In May of 2016, the family relocated to Palo Alto California, and in early June, Owen’s heart was successfully repaired in an 18-hour surgery performed by Hanley and his team at Lucile Packard Children's Hospital. Even though the surgery was an enormous success and Owen’s heart was functioning normally, the intensity of the surgery took a toll on the 6-month old’s little body. As a complication of the surgery, Owen’s diaphragm had become damaged resulting in respiratory distress. This caused just one more road block to getting Owen the new liver he desperately needed. In July of 2016, the family’s only option was to have a tracheostomy tube placed.
With his newly repaired heart and tracheostomy tube Owen quickly grew bigger and stronger, which made moving on to his liver transplant finally a viable option. With wait times on the transplant donor list often lasting for months, doctors suggested another option, a living-donor transplant. Owen’s parents both jumped at the opportunity to be able to help their son. After much testing, it was determined that Devin, Owen’s mom, was a perfect match! In September of 2016 she donated approximately 15% part of her liver to Owen.
In the fall of 2016, The Fochler family was finally able to transfer via medical jet from Lucile Packard back to Lurie’s in Chicago with ultimate discharge home in December of 2016. Since arriving home, Owen has had a few other setbacks resulting in major surgeries but has flown through them with amazing strength and determination meeting all his milestones. In June of 2018 Owen was able to have the trach removed checking off one of the last major medical milestones off his huge list. Fast forward to now, and Owen is a spry, loving, silly, three-year-old boy who loves pre-school, his rottweiler Stella, and Sesame Street. Without the support and care from the two amazing children’s hospitals, Lucile Packard and Lurie Children’s, in addition to other remarkable organizations like Ronald McDonald House Charities, Saving Tiny Hearts, and Donate Life America, the Fochler family would not be where they are today.