This is a brief overview from Kim, written April 9, 2012, and although she managed to scribble down a few words for me it doesn’t give all the details of their struggles but it does give you an idea of what they deal with day to day.
“In September of 2008 we were thrilled to find out our first baby (together) would be a boy, but that excitement was dampened when the ultrasound tech suspected something may be wrong. After returning a week later and ending up at a maternal fetal specialist we were told our baby had a serious condition, Esophageal Atresia. Babies born with this condition 40 years ago typically did not survive, luckily medical advancements have changed this. Essentially, Isaac’s esophagus was in two pieces that did not meet in the middle.
After many, many weeks of bed rest Isaac was delivered 9 weeks early, weighing in at 3 pounds 3 ounces. Attempts to give him a whole esophagus here in VA were unsuccessful, bringing us to search for someone who could help him. During his time in the NICU (4 months total) he ended up with vocal cord paralysis and was slowly losing his ability to breathe – resulting in a tracheotomy.
At 4 months of age Isaac was transferred to the University of Minnesota Children’s Hospital in Minneapolis, a trip we thought would take maybe a few months. All in all he was kept completely paralyzed and sedated for a total of 7 weeks the first time, and 4 the second while his esophagus was literally grown for him using a technique created at this hospital. His surgeon, Dr. Hess has a compassion and talent that is unmatched. Isaac slept for much of his early months, and we watched and prayed. He first left the hospital at 6 months, for a two month stay at Ronald McDonald House in Minneapolis to get strong enough to continue having procedures. His 14th surgery ever brought him an esophagus, October 2nd, 2009 – just before his first birthday. This was by far not the end of the road for Isaac. He spent a total of 11 out of his first 13 months in the ICU, coming home for the first time in his life 2 days before his second Christmas. Since that point we have travelled out of state at least 3 times a year, sometimes for additional surgery, sometimes for outpatient procedures to open his scarred esophagus.
For many years, we were dealing with a recurrent fistula (connection) between Isaac’s esophagus and right lung. Anything he swallowed could enter the lung, resulting in pneumonia among other things. He underwent several additional surgeries and came close to losing his right lung. As time progressed the situation became more dire – we would have a little boy who went from healthy to deathly ill in a matter of hours. His right lung has taken a beating over the years.
We ultimately took Isaac to Cincinnati Children’s Hospital when his lifelong surgeon began running out of ideas as to how to save him. The team in Cincinnati has proven to be nothing short of miracle workers. This past January (2015) Isaac underwent a 12 hours surgery to completely remove his broken esophagus and replace it with colon, the only way the team in Cincinnati could think of to save his life.
We currently travel to Cincinnati every 3 or so months for follow up scopes and procedures. Isaac’s new “Colophaus” is working great – but puts him at a high aspiration risk. This has created some additional health issues.
In addition to the travelling to appointments out of state, Isaac attends 4 therapy sessions a week to stay on track. He sees a physical therapist, occupational therapist, speech therapist and feeding therapist. He also participates in therapeutic horseback riding- which does wonders for his core (after being opened up more than 10 times his core needs some help!) and works to improve his self esteem.
Isaac continues to prove that he is a super hero on a daily basis. He is loved by many and loves everybody right back.