Jakob is our Rock Star! He is tough, he is a fighter and he is the happiest person we know. He is the joy of our lives! February 7th – 14th is heart week and Lisa and I wanted to share Jakob’s journey in the hopes that it will create much needed awareness of congenital heart defects and help give families hope that may be beginning a similar journey.
Jakob is our amazing 4 year old little boy. He has (and gives) so much joy, in spite of all he has been through. He’s a little fighter and is constantly smiling, laughing and growing developmentally, despite the challenges he faces.
Jakob was born at St. Joseph’s Hospital in Orange; at 32 weeks gestation and weighed 5 pounds. The condition he was born with is called Hypoplastic Left Heart Syndrome (HLHS); essentially he was born with half of a heart. HLHS is one of the most complex cardiac defects and is the most challenging to manage.
A couple of days after Jakob was born, we chose to have him airlifted to Rady Childrens Hospital in San Diego, where we felt he would receive the best surgical team and care possible. The first five months of Jakob’s life our family spent with him at the Hospital in the neonatal critical care unit. The days were touch and go – there were several complications. Jakob had two open heart surgeries, plication of his diaphragm, Nissan Fundoplication, g-tube insertion and pacemaker insertion. During Jakob’s second open heart surgery he had a stroke, which caused Epilepsy, Cerebral Palsy and rendered him nonverbal due to brain injuries from the stroke.
We were so happy, yet scared when the day finally came that we were able to take our baby boy home and love on him. It has been a challenge for everyone, but recently, we’ve been able to get Jakob’s seizures under control and are so grateful that he’s having substantially less seizures.
Jakob loves learning, loves people and attention. He goes to speech therapy two times a week and has physical and occupational therapy seven times a week. Some of his favorite things to do are puzzles, educational games and being in the outdoors.
Jakob’s neurology team informed us that Jakob may not ever be able to sit up unassisted or walk and we are so grateful that he keeps proving the doctors wrong. Jakob is now able to crawl and he’s trying to stand with assistance. We’re in the process of getting him fitted for adjustable leg braces with the goal of walking in the future. We’re not looking forward to it, but Jakob will also be undergoing the 3rd stage of his heart surgeries, the Fontan procedure, which is scheduled in April. (The heart surgeries that Jakob has undergone do not “repair or fix” his defect, they are merely a measure to extend the function of his heart. We are very hopeful with the advances in heart defect research that Jakob will have other options available to him when, and if, they are needed.)
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