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Single Ventricle Anomalies and Fontan Cirulation James Bachenheimer Defect

I know my son is 27yrs old and not a child per say! I need to tell my story or I may lose it.
James was born with single vercile aoreder in 1981 . when I took him home. james would not eat and I was upset I was doing something wrong. Took him to the Doctor at the time he was born he was blue on the lips. doctors missed it. sent him home. They thought he had a problem with his formula. At the time who new .who even thought a new born would have a heart defect I had no idea. the ex rays came back next day. got the call your son has a heart defect he needs to come to the hospital.
OH MY GOD!! MY HEAD WAS SPINNING AND I cry ed my eyes out.
If we didn't take him to the doctors that next day ,james would have didn'r congested heart failure. after all the doctor talk all the stuff they were telling me was like a dream. surgery heart transplant down the road. A font-an will have to be done. but we have to wait till he was 5. back than the fontan was pretty new.
so 5open heart surgeries and many catheterizations. He had the fontan it gave james a few yrs. than back in the hospital. they found a blood clot. here we go again. I was numb threw out his illness. trying to be brave for my son.
at night I would sit by his beside in the hospital and wacth him sleep ,making sure he was breathing. The tears would stream down my face and I said why my son why!! I didn't have time to feel sorry for myself, James has been threw alot. he grew up and he is now29 and has done real well for a fontan kid. but in the past 5yrs. he has been going down hill his heart is getting weak .
The doctors are doing a catheterization on tues. there is talk of revision of the fontan or heart transplant.
He is an adult now and it is hard for me. because I still see that little boy in the hospital bed ,hooked up to tubes and machines that breath for him. I hope I can do it all again.
I never went to a support group I thought I could handle it myself. but I find my self breaking down alot. I had to write his story and there was much more. but I just wanted someone to hear me. My son's name is james bachenheimer his dad and I were divorced a few yrs back. I am remarried and live in cherokee nc. Jame lives with his sister in Pittsburgh pa. were he will be going into children's hospital. I plan to go up there when he has surgery. this will be number 6 for him. but we are lucky he has made it to adult hood. so if anyone out there who has just had a baby and they are faced with the heart retching pain of have a child with a heart defect. there is a light at the end of the tunnel it a long way and a hard one. I hope that someone will read this and say. Its not the end for my baby there is a light!!

Patti Rabner