Hi. My name is Jenn Castleton. I am 25 years old and my husband Rich and I had our first and only child so far on June 4th of last year. I thought I would share a summarized story of our boy Logan.
Logan was born with a congenital heart defect called hypoplastic left heart syndrome, which basically means that he has half a heart. At our 20-week ultrasound they told us about his diagnosis, and he was expected to be a miscarriage soon after that appointment. Not only did it look as though he had hypoplastic left heart syndrome, but he was showing major signs of heart failure already.
As time went on, the doctors told us he might make it to birth. They also told us that, if he did, he might not live longer than a day or a week. Delivery time soon came and we moved to Indiana. Minutes after birth, Logan was taken to Riley Hospital, where he was also diagnosed with hydronephrosis and situs inversus. Basically, we almost lost him three times in that 2-month period in the hospital after he was born.
He underwent open heart surgery (Norwood procedure), went back into the OR 2 days after that to have his chest sternum closed up, had malrotation surgery, and his last procedure was his pacemaker surgery.
It has been a treasurable experience to see the compassion and devotion that doctors have shown throughout Logan's journey. The technology that prepared us to help our boy as early as 20 weeks has made a huge difference. It is amazing to watch Logan enjoying life now - seeing him look at airplanes that fly over his head, watching him feeling the grass, and playing with other toddlers.
Logan went back in March for his second open heart surgery (hemi-Fontan) and will go back again next summer for his third surgery (complete Fontan). This three surgery series was only discovered about 15 years ago and we are continually amazed at the miracles that have happened. The series he has had (he still has one more left) will only prolong his life. There is as of yet no cure for this heart defect. Seeing how far research has come has motivated me to help whenever I can to help congenital heart research go on.
When Logan is 4 years old, he will go for a surgery to fix his hydronephrosis. He will have a heart transplant when his heart shows signs of failure. As for right now, when I wake up in the morning to him yelling "mama" and "dada" and see him and think about all of the love and support he has received from doctors, nurses, family and friends, I can't help but realize the kind of hope and miracles that exist in the world today. The journey is just beginning. Thank you for letting us share a bit of our story with you.