Look who made President Barack Obama's instagram news feed! It's Isaac, the five year old boy featured on the cover of our GTC brochure & website. Isaac and his family were invited to the White House to hear the President speak about the Affordable Care Act. Isaac had met his "lifetime" maximum insurance coverage at just the age of one. Isaac's family is grateful that children like Isaac will no longer have to worry about lifetime maximums or fear lack of future coverage due to pre-existing conditions, two issues that patients with tracheostomies are likely to encounter.
You can read more about Isaac's journey here:
http://www.barackobama.com/news/isaac-obamacare-lifetime-limits/
This is a brief overview from Kim, Isaac's mother, written April 9, 2012. Although she managed to scribble down a few words, 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 returned to Minneapolis at least 3 times a year, sometimes for additional surgery, sometimes for outpatient procedures to open his scarred esophagus.
What we have learned is that nobody can work on Isaac’s esophagus but Dr. Hess. Isaac’s anatomy is now so complex, he has had 21 major surgeries, most of them in Minnesota – that other doctors do not care to operate on him, and quite honestly we only trust one doctor when it comes to Isaac’s esophagus.
Currently, we are dealing with a recurrent fistula (connection) between Isaac’s esophagus and right lung. Anything he swallows can enter the lung, resulting in pneumonia among other things. He just came back from a 6 week stay in Minneapolis-where he had two surgeries to correct his fistula, and spent many weeks in the ICU. Just weeks after returning the fistula reopened and we will be returning to Minneapolis again.
As it happens every year, my husband Greg and I are out of leave from work, we spend so much time in the hospital with Isaac that we inevitably run out. While this is not the most important part of this journey it is a part of it, and it does affect us all. We have two other children and they miss us when we are away and they miss out because of Isaac’s needs.
Looking at Isaac you would never believe what he has been through; he is an incredibly happy, excited little boy. He runs and plays and roughhouses, he loves his sister and brother and he has a charm that is hard to find in most grown men, much less a three year old! His resiliency and love keep us all going, and we will continue this journey for as long as he needs us to.”