My 20 year old daughter, my only child, went into a NY hospital to have her aortic valve replaced. Months before she had the surgery, her cardiologist of 20 years sat down with us and reviewed the diffferent methods that could be done to replace the valve. She even told my daughter, who was in her solphmore year of college, not to wait to have the surgery because she was assymtomatic and if she waited she could have irreversible heart damage.
Also during this visit with her cardiologist of 20 years, the cardiologist had my daughter call the surgeons office to schedule a consult. When my daughter called, she was told that they would have to call her back as the surgeon did not have time to see her. The surgery was scheduled in August, 2003 and the surgeon was to do a consult two days prior to the surgery. My daughter went into NY two days before surgery to meet the surgeon, when she got a call saying that the surgeon had to cancel the consult because he did not have time to meet with her. My daughter did still go into the hospital to have her aortic valve replaced, and the procedure she signed consent for was the Ross Procedure.
Her cardiologist chose this surgeon because he was suppose to be very experienced in doing this procedure. My daughter allowed the surgery because the cardiologist of 20 years recommended this surgeon. When the surgeon came out of surgery, he informed my husband and me that he repaired the valve instead of replacing it, however there was still a small leak. Being that her cardiologist, who was there when he told us, seemed okay with this, we trusted her and so we too felt okay. No explaination was given for not replacing the valve, and no consent by us, being that my daughter was already under anethesia, was given by us, regarding the change in procedure.
My daughter was released from the hospital 5 days later, with a collapsed lung and a respiration rate that was double what she went in with. The surgeon never even saw my daughter post-surgery. He had all different strange doctors seeing my daughter post-surgery. He did not even release her. One of the Resident Doctors released her. Three weeks post-surgery, my daughter suffered a heart attack. The repaired aortic valve burst.
She was rushed into the hospital that was down the street from her college, as she was at college taking on line courses when it occurred. My daughter was not a sick child, she did cheerleading in high school, danced from age 3-12, and was anxious to return to college post-surgery, as she was very active in her sorority. My daughter even went swimming the night before she had this surgery.
Back to the surgery, she was rushed in to have her aortic valve replaced. The aortic valve had burst and the sutures came out. That was the cause of the heart attack. The valve was successfully replaced, but five days post-surgery, her organs started to fail. The fifth day post-surgery, she was rushed back to the NY hospital to be put on a ventilator, for a possible heart transplant. She was transferred from the NJ hospital to the NY hospital by ambulance. It was an emergency and she should have been transferred by helicoptor.
By the time I arrived to the CCU unit to see my daughter, the doctors lost her. The ambulance staff said that my daughter was fine in the ambulance, talking, etc., which I believe because she was talking to me prior to the transfer and she seemed okay, so when she passed away, I was in total shock.
I also need to let you know that prior to the emergency valve replacement the surgeon allowed my daughter to talk to me over the phone, as I was three hours away and had to rush to her, as she was by her college when this occurred. Her words to me over the phone, which will stay with me forever was, "Mommy, I am really pissed off that the surgeon did not do the right surgery the first time". I just told her how much I love her and rushed to the hospital.
I was only given five more days with my daughter, before she passed away. I did hire an attorney after losing her. The attorney sat on the case until two months before the statute of limitation, while all along he said he was taking care of things. He told us he was not taking the case because the surgeon did a judement call. Well that judgement call killed my daughter.
She was at the prime of her life, dating a college guy, and they were discussing marriage, etc. She had her whole life in front of her, and her future was also mine, being a grandmother, seeing her married, etc. The excuses we received for the surgeon doing a repair, instead of replacement were pitiful. We were told first that the surgeon did not want to keep my daughter on the respirator longer then he had to. The second excuse was that my daughter was in childbearing age and if she had the replacement she would be on coumadin, which could affect her having children. My daughter was going to adopt children anyway, due to her heart condition. So now I do not have my child, and I will never be a grandmother. My entire life ended with my daughter's life ending. Where is the justice in this? And not one person would help me, following her loss, due to this horrible surgical error. Sincerely, Karen Vanderhoof
I TOTALLY understand what you are going through. I felt like I was reading part of my sons story when I read what you wrote about your daughter. I know why this keeps happening, but I can't write it down right now. I would love to talk to you--as a mom that understands, as a human being, as a person who the medical system and the justic system has also failed. My son has endured 9 heart surgeries and will have to have more and will die from what was done to him because of the EVIL that is the health care system. He is my first baby and since the day he was born- we have been caught in the nightmare. We hate to say this because it's not the way his life would have been like, but he is still with us and he's only 14 years old. I don't sleep very much because---I don't want to wake up, walk in his room and find out that he had died---all alone in his bed. It bothers me because I realize that this is become OUR normal because of the Doctors and the whole medical community. I can't write anymore---it makes me realize that what I fear is real and I have to think about it when I type. It's hard enough to not look at every aspect of our lives and see how it has been changed and we have had to fight, suffer, etc. because of the system. If you want someone to talk to, complain to, etc. I really would like to try and help you. Sorry for your loss, A MOMMY
Dear Karen: I am so incredibly sorry to hear that your daughter died. I think of that tiny tiny baby with the big scar, and how you fought tirelessly to get her the best medical care. Your pain must have been insurmountable to have come so far, only to have a story as this be your reality. I am deeply saddened that your years were filled by such sorrow.
And today I learned of your own passing. The thought that warms my heart is that all your pain has ended and that there are two HUGE smiles in Heaven today. No saddness. No surgeries. No illnesses or emptiness....but once again you can feel the joy and the love that exist between you and your daughter. God Bless You Both.
Dear Anonymous, The story of Karen and Renee touches me more than you could ever know. I am Karen's sister and I witnessed the pain my sister endured for years. I have to tell you, she never shared these writings with me. I never knew she was in "The Fatal Care" book. My sister touched so many people's lives. I want to thank you for caring about her and Renee. I was looking up information on the American Heart Association and Karen and came across the book with her story. I am not even sure my entire family knows of this. The medical system needs an overhaul. The voices of patients and families need to be heard. Too many mistakes are made and innocent people are affected for the rest of their lives. My sister lived in so much pain. I do know that she is at peace. My sister is with her precious daughter Renee. The sad part is my family has lost two amazing loved ones. We do know that we have two angels in heaven, Karen and Renee,watching out for us. I do not know who you are, (anonymous), but Thank you for your sincere words. I pray that books like "Fatal Care" and the Doctors involved in these programs will make the changes we need and help to alleviate the unfortunate mistakes that occur.
