His Name is Lakota - My Journey with Dilated Cardiomyopathy
God works in mysterious ways.....
"Please bring your family with you to your next visit," is what the cardiologist told me. I was in my fifth month of pregnancy. High-risk, again, I was diagnosed with high blood pressure, cardiac arrthymia and a heart condition called left ventricular dilated cardiomyopathy. I was 37 years old.
For whatever reason, at the next visit, I was unable to bring my fiancee with me so I went alone, having no clue at all what I was in store for. Was it really bad? Was I going to die? What about my baby? I assumed that he would tell me that he would give me some pills and all would be well; just rest. I was wrong.
"Your ejection fraction is 30-35%" he said. My ejection what? He went on to explain to me that the ejection fraction is the percentage of blood that's pumped from your heart with each heartbeat. He also went on to tell me that a normal ejection fraction is between 55 and 70 percent. Obviously, mine was a bit below that. In other words, there was not enough blood getting to my brain, liver, kidneys, etc.
Okay, so that explained the extreme fatigue, which I thought was just pregnancy related. It also explained the dizziness, shortness of breath and palpitations. So, now what?
"It is my recommendation that you terminate your pregnancy," the doctor said. After my mouth dropped open, he explained to me that it was his professional opinion that I would not survive the labor. He concluded that I would be going into congestive heart failure before, during or after delivery. This, he said, was due to the increased blood volume that was being forced into my already weak heart from the pregnancy. With the extra weight and fluid that I would gain and the stress that your body goes through during labor, it looked like my pregnancy was in big trouble.
I asked him to discuss it with my obstetrician. I also told him, through tears, that I did not want to terminate my pregnancy. Didn't he know that I was five months pregnant? Didn't he know that I could already feel my son moving and kicking around inside of me? HOW could he ask me to do that? Keep reading, this next part is just unbelievable (and is also the reason why I no longer see this cardiologist).
My cardiologist seemingly gets angry with me. Yes, he does. He starts ranting about how I already have four children and how selfish it is of me to risk leaving them here with no mother - just to have this baby. Did he really just say that to me? Was I really being selfish? Oh my God, was I put here to end this innocent child's life who was perfectly healthy inside of me?
I went home very upset and told my family what the doctor told me, then I waited. The next day I got a call from my obstetrician. She was a pretty good doctor, I thought, who was part of a practice that specialized in high-risk pregnancies. I figured she would come riding on a white horse and save me from this terrible dream I was in. Wrong again. She called me to tell me she agreed with the cardiologist. She carefully explained to me all the risks involved for me and my baby and I ....I just broke down. They basically said that I would die if I had this baby and possibly the baby could die too if I went into congestive heart failure.
Crying uncontrollably (still on the phone with her), I make the decision to go ahead and terminate the pregnancy. An abortion. I hang up after making an appointment to go in to see her in a couple of days. Let me tell you, after already experiencing a miscarriage prior to this pregnancy, you have no idea how something like this wreaks havoc on your family. My kids were telling me that they didn't want to lose me. My fiancee, just turned himself off and said, "Do what you think is best. I don't wanna lose you or the baby." Neither of us believe in abortion. That was, essentially what I would be doing, right?
For the next couple of days I prayed, then I cried. Then I cried and I prayed. Nothing in this world could have caused me more pain than what I was about to go through. Pulling at straws, I asked the OB (obstetrician) at the next visit about delivering the baby early through induced labor instead. Her response was to send me to the hospital to meet with a neonatal doctor so I could talk to them about the viability (or chance of survival) of my baby if he was to be delivered early. That doctor told me about how they are not always successful with saving babies at the point in pregnancy . First problem was that my son's lungs were not developed yet - that wouldn't happen until about the 8th month of pregnancy. Then she showed me the tube they insert into the baby's mouth to breath for them and made it quite clear to me that my baby's throat would not likely be big enough to accommodate the tube and that it would be very fragile. Okay, so basically, you're saying you can't save my baby, I thought to myself.
I left the hospital still upset, still crying (even more so after viewing tiny little babies with millions of tubes in them in the NICU unit). I decided to proceed as BOTH my doctors suggested. Back at the OB/GYNs office, I sat way on the other side of waiting room. Alone. Away from the pregnant women sitting there with their husbands rubbing their bellies. Away from the happiness of childbirth. They were happy. Yes, they were at a high risk pregnancy office, but they weren't there that day to sign papers to end their babies' life. I was.
The termination was scheduled very quickly. If I remember correctly, it was about two or three days later. I arrived at the hospital, checked in at admitting, broke down at admitting and then got ready for the procedure.
Time is Up
I was given a private delivery suite, for obvious reasons. The nurse came in and welcomed me and gave me a gown to change in to. By now, my eyes were bloodshot red and I was still sobbing. She knew why I was there. Seemingly, the entire staff did. She asked me if I needed anything and I said no. "The doctor will be in shortly," she said and left. She looked upset as well.
The doctor came in and introduced himself, explained how the procedure would work and then asked me if I had any questions. "Please, if there is any way to save my baby, please try and do that," I said. I continued on, "I know that his chance of survival may be low and I know there's a chance that you can't get the trachea tube down, but can you please, try?" He looked at me oddly and said, "You sound like you're not sure about this". "I'm not," I replied, "but my cardiologist and my OB both said that this is the only way and that I wouldn't live through the delivery."
He sat there for a few seconds and said nothing as he looked at my chart. "I'll be right back." And then he left. A minute or two later, the nurse came back in and tells me that the doctor was on the phone with my cardiologist. I'm thinking to myself, what's that all about? She says to me, I think he is trying to help you. "What do you mean? I asked her. "I don't want to say anything or get your hopes up but let's just wait and see." She stayed in the room with me and we chatted to help me remain calm. Ten minutes later, he came back in.
"After speaking to you and seeing the shape that you're in, I decided to talk to your cardiologist and my co-worker; I gotta tell you after reviewing everything, I don't agree with either of them. I actually think that we can keep you pregnant, watch you closely and get you to about 32 weeks where the baby will be more viable." the doctor says.
"So, I don't have to do this?" I asked.
"No, I really think we have a good chance to get you to 32 weeks; you'll have to come to the office weekly until delivery, but I think that your heart is strong enough to make it if you want to make that decision." I called my fiancee and told him to come back and pick me up...we were keeping the baby. "Yay! I'm on the way!" my fiancee screamed.
The next three months were tough; weekly visits to the obstetrician and biweekly visits to a cardiologist that was upset with me for not taking his advice. I stopped seeing the initial obstetrician and saw other doctors within the same practice. I think she was hiding from me at one point. In the end, I surprised everyone and made it to 36 weeks instead of 32 weeks. I went in for an induced natural labor.
After more than 12 hours in labor, I finally dilated to 8 cm. But my water didn't break. The doctor came in and broke my water and the labor got moving again. But something was wrong.
The nurse came in to check on the baby because his heartbeat was slowing down. Oh no, what now, I thought. After checking my cervix and feeling the baby's head, she calls another nurse in and asks her to contact the doctor. What is wrong? The doctor comes in and checks my cervix. "I'm sorry," he tells me, "I know you were hoping to have a vaginal delivery, but the umbilical cord is stuck in the vaginal opening and the baby's head is pressed on it. We'll have to do an emergency Cesarean."
Oh, okay. Is that all, after everything I've gone through to keep this baby, NOW I'm scared. It was my first surgery...ever. Nonetheless, it went through quite well and my son was born healthy, except for not being able to hear good in one ear.
The next day, my cardiologist came to visit me at the hospital. The nurse was in the room checking my vitals. I was in bad shape. My lungs had fluid in them, but I didn't care. My baby was here, he made it and I would make it too. I knew that was God's plan. The doctor told the nurse that I was lucky to be here. He came to my bedside and shook my hand and said I did a good job. "You did remarkably well, you surprised all of us. Your heart was stronger than we thought." A thank you, and a smile was my response.
I had searched for baby names after I was diagnosed with my heart condition. I wanted to give my son a name that meant something. I decided to draw on my Cherokee roots and give him a Cherokee name. His name means "friend" or "ally". "What did you name him?" the doctor asked.
His name is Lakota.
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