Jackson “Bert”
The “Bert” tradition continues into the fifth generation with the October 2017 birth of our son Jackson Bert. At 21 weeks, my wife Jazmin and I were made aware that Jackson had a severe congenital heart defect called Hypoplastic Left Heart Syndrome (HLHS), and would be born with a significantly underdeveloped heart. With HLHS, a three-stage surgical approach has been adopted in the last 30 to 40 years to improve quality of life and prolong survivorship of patients previously deemed incurable. In Jackson’s first year of life he had two reconstructive open heart surgeries and spent 100+ days in Johns Hopkins Hospital in Baltimore, MD. Jackson had his third open-heart surgery in June 2020 at Advocate Children’s Hospital in Chicago, IL.
When Jackson was a little over a month old, during the insterstage period between his first and second open heart surgeries, Jackson went into cardiac arrest and experienced a hypoxic brain injury. Following this brain injury, Jackson was diagnosed with a development disorder of non-birth mixed cerebral palsy, Jackson’s mixed cerebral palsy is quadriplegia (all four limbs) and effects his movement, imbalance, lack of coordination, spasticity, and meeting important development milestones. Jackson’s receives physical therapy, speech therapy, occupational therapy and medication. Our goal with these therapies, and through the use of mobility aids and assistive devices is to give Jackson the best life possible.
If there is anything Jackson has taught us, it is that nothing in life is promised and you have to make the best of what you are given. Jackson is the strongest he has ever been, but has an unknown road ahead. We will continue to strive to do our best for him in an unchartered tomorrow. Jackson has been the ultimate blessing to our family and his strength, resiliency and determination to persevere and survive has been our greatest gift. Our family’s medical journey has not been easy, but with our faith as a foundation and our family as a priority, we take each day we are given with great gratitude. Our family has been blessed in this sliver of time to benefit from modern medicine, the advancement of surgical intervention and the talents of individuals who are willing to share their gifts.
