My son, Jacob Baker, was born with Hypoplastic Left Heart Syndrome and a intact atrial septum. He spent his first few years of life having multiple life-saving surgeries. By four months old, Jacob had endured two open-heart surgeries, multiple heart caths, a g-tube surgery and many other procedures. By age 3 he had already had three open heart surgeries and a complete airway reconstruction. As a child, Jacob was part of a movement of heart moms to have pulse ox testing passed in the state of West Virginia. Despite his rough start, the next 10 years were fairly normal. We focused on giving Jacob the best life possible.
Doctors would not give Jacob a life expectancy past age 5. On March 23rd he will be turning 15 years old! Jacob still has a heart echo annually. We also travel to Cincinnati once a year to participate in their Fontan clinic. The clinic focuses on staying ahead of issues that they know will arise with Fontan patients. Jacob does have Fontan Associated liver disease and it is a bit more advanced than we would like. Jacob will need a heart transplant one day but for now his heart function is stable and we pray he won’t need one for as long as possible.
For his birthday this year, Jacob said he wanted to help others with special hearts like him. He wanted to raise awareness and funds for the American Heart Association. Jacob spoke in front of the Hurricane City Council and shared his experience with many from our town. He also requested a proclamation for the week of February 7th-14th to be recognized as Congenital Heart Defect Awareness week, which the mayor honored.
Jacob has also published multiple articles in the Herald-Dispatch, Charleston Gazette-Mail and the Hurricane Breeze. The articles also share his story and facts about Congenital Heart Disease. In addition to being an amazing advocate for Heart Disease, Jacob LOVES trains. He collects O-gauge trains and is a wealth of information when it comes to railroad history. Jacob is an old soul. He loves music from the 50’s-70’s. He is also a huge history buff.
We could not be prouder of Jacob and the amazing man he has grown into. We know he will continue to do great things and be an amazing advocate for Congenital Heart Defects.