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Toni Conrad’s Story

Indiana, PA

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Toni's Story

I have always had a heart block. It is called 3rd Degree Complete Heart Block or AV Block. I was born with it and I have never had a problem. I have seen doctors about it all my life and no one ever thought I should worry too much.
September 2007 my husband and I and decided it was time for us to be parents. Everyone who knows me knows all I ever wanted to do was be a mom.I called all the doctors I had at the time and told them what I wanted to do and they told me to call them when I was pregnant. We were pregnant in October 2007. I called all the doctors and they said they would watch me more closely in my 2nd trimester.
I was progressing through pregnancy with no problems, except some higher blood pressure. Once I cut back on sodium I was absolutely fine. I took my blood pressure every day and watched my weight very carefully.
On Feb. 18, 2008, (5 months into my pregnancy)I passed out. It could have been pregnancy, my heart or just being hot. I called Dr.S (my OBGYN)and he checked me out. Dr. S called Dr. C (my Cardiologist) who then called me and said to see an electrophysiologist because of the fainting. To make a long story short the Electrophysiologist decided I needed a pacemaker sooner rather than later.
We did all our research and a pacemaker was to be an easy surgery. I would be awake for the surgery and the only thing we were really worried about was the x-ray. However, we also learned that babies who are born early get an xray almost every day, so we didn’t worry about that either. The surgery was April 15, 2008 a ta top Hospital in Pittsburgh, PA.
I had the pacemaker implanted while being awake (which was totally weird) and saw Kevin (my husband)and my mom in the hall on the way to recovery. I was like “it was soooo weird, I felt it going in and blah blah blah” then on the way back to the recovery room I started to get sick. My blood pressure dropped and I think they lost my baby’s heart beat. They took the machine monitoring the baby off my belly and put it on my heart and found it was filling up with blood. I passed out and the next thing I remember was I had a cut down my chest like open heart surgery and a tube coming out of my chest to drain the blood.
What had happened was that the doctor hit a blood vessel and my pericardium filled with blood and was drowning my heart. In that time they said the baby was fine, but she was very lethargic. Prior to my surgery she moved A LOT but I didn’t feel her move for 2 days after my surgery.
The high risk OB came in and did several sonograms.  He found her brain ventricles were open slightly more than they should be. Over the next 3 months I was monitored by 5 doctors. My daughter seemed to bounce back and she moved like crazy inside me. It was decided to have her at the hospital in Pittsburgh just so she could have an MRI. I could not get one because I have a pacemaker now.
So on Sunday, July 6, I went in to be induced. After 39 hours of labor, a fever, a terrible cough and heart failure, Kendall Hope Conrad was born on July 8, 2008 at 11:17 am. She was a chubby 7 lbs 11 oz and 20 1/2 inches long. She had a lot of black hairs and was so chubby.
I found out I had cardiomyopathy while I was in labor and soon after my daughter was born we found out she had severe brain damage. She only had a brain stem. The rest of the brain was killed as a result from my surgery on April 15. On July 11, the doctors told us Kendall was going to never grow, eat, talk, see, hear, speak, or even hold a pencil on purpose. After some discussions with my husband and our families and the preacher, we decided that we did not want any false means to keep her alive. She immediately became a DNR.
I have had several surgeries and have always said I don’t want that, so it is not fair to do that to my baby who can never have any life.
On July 14, we brought Kendall home. She was in hospice and she far surpassed any predictions as to how long she would live. She ate about 1 to 2 ccs of milk every 3 hours and pooped maybe 2 times a week. She had been loosing weight and was only abou t3 and a half lbs when she passed.
On October 2, 2008 at 12:15 pm the visiting nurse came and said her heart was working overtime and that her lungs were filled with fluid. She was wheezing and struggling to stay alive. The nurse said in a normal sick person, they would only have a few more hours, but she also said Kendall has defied all the odds already so she could not make a guess. At 12:30 am that night we went to bed normally with Kendall because she had not passed and we had my sisters wedding weekend starting.
Kendall was still alive at 6:10 am on October 3, 2008. However, she had not ate anything at all since 11:00 am Thursday, but its not like she ate when we feed her.
My mother took Kendall to her house so my sisters could watch her while we all got ready to do things for my sisters wedding. I started to get cleaned up at my house and was just going to take a shower when my phone rang and it was my mom. I knew what she was going to say before she said it.
My mom took Kendall to her room and set her down on her bed. She wanted to wrap her in her blankets better and mom thought she had stopped breathing. My mom called for my sisters to come to her room. They got there and confirmed that Kendall had passed.
At 7:20 am on October 3, 2008 Kendall Hope Conrad passed away. She was truly an angel sent to save my life and I am so blessed to have had known her. I know that I will see her again someday and she is always looking out for her mommy.
My sister got married the next day (October 4, 2008 ) and on October 5, 2008, we buried our little girl in a small service at a local cemetery.
When I got diagnosed with Postpardum Cardiomyopathy, my Ejection Fraction was about 20%. Up until the day my daughter was born I was walking at least a mile a day and swimming every day.I had even swam the morning that we went to the hospital to be induced. As of January 21, 2009, my EF was 35% visually and about 43% calculated. I have been in a Cardiac Rehab program and I have been improving greatly. I will have an echocardiogram in July 2009 to find out my new EF. The entire time I have had cardiomyopathy I have gone to work full time, exercised almost every day, and proceeded with my life as I normally would. I am not the “typical” cardiomyopathy case. Because of that I was doing research. With my Complete Heart Block, my heart ran about 30-60 beats per minute. After having a pacemaker put in and electrically connecting my chambers, my rate almost tripled to 120-150 beats per minute. I kind of thought that you can not Triple a heart rate and be ok, but all the doctors I had said it was normal in pregnancy to have that high a rate (but most women start higher as well). So in my research, I found a very top specialist in Cardiomyopathy. I emailed him my story and asked for an appointment. He was able to see me within 3 weeks! When I got there he confirmed my suspicions… I almost definitely do not have Postpardum Cardiomyopathy (which is caused by pregnancy) but instead Tachacardia Induced Cardiomyopathy (caused by my heart racing). When my daughter was born I had an enlarged heart, but with the help of medicines and exercise, I have been able to relax my heart and it has shrunk to a normal size. At my next appointment, I am most confident I will no longer be in Cardiomyopathy as well. Over the past 18 months my husband and I have been through a lot. I am hoping to help someone else with what I have been through. My goal over the next 18 months is to recover enough to have another baby. It is not to replace Kendall, but to fill part of that “hole in my heart” or help to fix my “broken heart”.

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