Jacob | CaringBridge

Jacob’s Story
Little Jacob came along Oct 13, 2006. He was a big, healthy baby and we were thinking we were going to be going home in a day when we got the news he was born with several CHDs (congenital heart defects) and would have to be transferred to another hospital to have heart surgery. We had no idea there was anything even wrong with him.

Click on the "Read Story" link below...



Jacob had his first heart surgery at 11 days old to fix a Coarctation of the Aorta, however after a routine surgery follow up, he was diagnosed with hypoplastic aortic arch and he had to go back in for open heart surgery at 2 months old to have an aortic arch reconstruction. He also has a bicuspid aortic valve that was diagnosed originally and will have to be followed throughout his entire life to watch for leaking and stenosis -thickening & narrowing and an abnormal mitral valve.His condition is called Shones Complex Variant. But, after another follow-up appt, his cardiologist discovered he had developed subaortic stenosis, due to a subaortic membrane (left ventricular outflow tract obstruction) which will require another open heart surgery to remove it when it grows to a certain point.r it starts to leak it will have to be repaired right away. Otherwise we wait to have the pressure gradient across his valve measured every six months to see if there has been an increase. No way to know when that will be, so it's my black cloud that follows me. I will never have an appt where his cardiologist says he's fixed...our news is either "stable" or "worse", which is not the most normal way to live, but it has become our "new normal".  When the membrane is removed, there is no way to predict if or how fast it will grow back again (it's like a weed) and the only way to remove it is with open heart surgery.

Jacob was also born with a congenital defect in his knee, called Discoid Meniscus. He had surgery to repair that at 2 yrs old. Another knee problem he has been going through is called Avascular Necrosis. His bone at the end of his femur was dead, causing the cartilage to be completely gone. His surgeon has never seen this in someone even close to his age before. He had a very invasive operation on April 7, 2014 to do a cartilage transplant. They took cartilage from a non-wight bearing part of his knee and transplanted it into the large space where he had non. We are now waiting to see if the transplant "took". His cartilage cells were sent to a lab in Boston. If the transplant fails, he will have his cells grown into synthetic cartilage and it will then be transplanted

I wouldn't trade this rollercoaster life, though. Jake is a blessing to us and has brought our family much closer. He is the adorable baby brother to big sister, Stephanie (20 y/o) and his new big brothers Jacob, Jordan and Griffin!

Newest Update

Journal entry by Cindy Shaw Csiszar

Well, going to school today was a little too ambitious. Jacob wasn’t physically ready for a day of school when he was just starting to spend time out of bed. We concentrated on “feeling like a human” today, as Jacob called it. He was in a lot of pain, but is so independent that I would just hear his walker clunking on the floor from the other side of the house. The kid is nothing, if not determined! He is going to go to school for the second half of the day tomorrow, then will have the long weekend to keep recovering. This isn’t even the worst of it...his next surgery will be brutal. The only good part about the next one is that it will just be one leg. Having both done at the same time has been awful!


One of Jacob’s teachers, Mrs. Renfro, has been absolutely amazing. She is his Math/Science teacher, so not even his homeroom teacher, but she calls/texts a few times a day and has since his the day of his surgery. He LOVES her and it cheers him up when she calls him. Today she asked if he wanted to FaceTime with his math “small group” so he wouldn’t miss the lesson they were doing today and get him back in the swing of things. It was great...the kids loved seeing him and she would call on him just like regular class. She also “prepped” the kids about his having a walker and told them to get all their “old person stories” out today so they wouldn’t relate it to him tomorrow. And...she had a talk with them about the difference between helping and smothering. She told them his legs aren’t working right, but his hands and brain are just fine, so he is perfectly capable of drinking out of his water bottle and eating by himself. Haha. I am binging a pillow for him to sit on so he doesn’t have to bend down to sit, and he will have another chair to keep his feet up on. I think we got this!!


Please say a prayer for a good day tomorrow. It will be exhausting for him. Also, kids can be mean, so I am praying he doesn’t get made fun of. ☹️


Love to all,


Cindy
Can you help power Jacob's site?

A $30 donation powers a site like Jacob's for one month. Help keep CaringBridge online for them and for you.

Show Your Support

See the Ways to Help page to get even more involved.

Personal Fundraiser

Support Links

Helpful Tasks

SVG_Icons_Back_To_Top
Top