My name is Jasmine Gilgosch and I was born and am living with HLHS. I was born March 23, 1993 in Bradenton, FL. I was transported immediately to All Children’s Hospital which is where I would have all my surgeries/procedures. I’m not quite sure if I have any other medical issues or issues with other organs going on as I don’t have insurance and haven’t been able to see a cardiologist since I was 19. I currently take baby aspirin, Lasix, and Lisinopril but because I can’t get them refilled I take them on an as needed basis. It’s probably not the healthiest option but the two times I did have to go to the ER I was told I have no signs of heart failure or anything wrong with my heart so I guess I’m doing something right. I am a currently a nanny to an amazing little boy and I absolutely love my job. When I’m not working I’m in class as I’m pursuing a degree in elementary education. I would like to teach grades Kindergarten to second grade.
A definite downside to CHD I’ve noticed my body has started to slow down. It started about six months into being 24 and has continued ever since. I used to be able to go out all night with no issues but now I constantly have to take breaks and sit down. Even in my job before nannying I would feel myself slow down and like I needed to take a break when at age 18-23 I could go for hours and would have no issues at all. I also took notice in my drinking habits. I used to be the friend everyone had to try and keep up with. Now I can’t drink mixed drinks without getting a headache the next day and it only takes three cheap beers to get me feeling drunk. It’s a very scary feeling to say the least.
On the bright side though I still enjoy a lot out of life. I enjoy going to the beach, going out dancing with friends, having a couple drinks with friends, I enjoy writing in my spare time. I also enjoy family time, my job, and the small group of friends that I have.
Speaking of family I’m very close with mine. We’re very tight knit and just full of love. My story with my family is a little different. My birth mother neglected to give me my medicines and take care of me properly so I ended up with pneumonia. I ended up in medical foster care with my mother at six months old and she had no idea how extensive my case was. She was thrown into this life six months in and had no idea which way was up with me. She still took me in and nursed me back to health so I could continue to have my surgeries. I was eventually adopted at 5-years-old (the day before my sixth birthday) and my family is my family. They all did everything in their power to take proper care of me but also ensured I lived a happy and as normal of a life as I possibly could.
When it comes to the idea of my own family I’ve been told honestly I cannot have kids. It’s too high risk since I’m so short. They say the weight gain from pregnancy would tear my Fontan and the baby and I both would end up dying before I could give birth. It was a very hard pill to swallow but I’ve started to come to terms with it in the last year and have decided adoption is the way I’ll go. I even have a pact with myself. If I’m not married by 32 I’m going to go ahead and adopt and do the single mom life.
If I could give any advice to CHD parents it would be: let your kids live! Let them play outside. Let them get scraped up. Let them experience a real childhood. Don’t be afraid they could get sick. Anyone could get sick leaving their house, hell, anyone could get sick being contained in their house. Let them run until they stop to catch their breath. I’m not a parent but I know how my mom raised me and she gave me a childhood. In between my second and last surgery I’d play outside and get in the dirt. I’d sit in the wheelbarrow my dad had and let him push me around in it. I sat in my little red wagon and go on walks and love it when my mom would pull me through sprinklers. I started going in the pool at six months after the pneumonia was gone. You can protect your child while still letting them live. If you shelter them it’s only going to hurt them when they do get into adulthood. They’re not going to know how to handle themselves and it unfortunately probably won’t end well. So, parents, let your kids live.
If I could give any advice to CHD kids or teens it would be the same. Live your life. I did. Were some of the choices I made the best? Heck no but they gave me life experience. I won’t lie I was spoiled and was brought up to be innocent. I still lived a decent life but I was given many opportunities others didn’t get. Despite all of that I wanted to live even more. I wanted to go out with friends when I couldn’t so I would sneak out. I wanted to just have different experiences so I skipped class, I smoked cigarettes, I smoked weed, I drank all starting at age 15. I did things my mom would keel over if she ever found out. I did it all because I wanted to live and be as normal as possible.
I did things because they were stress relievers. I never felt pressured by friends because there were times I said no and they didn’t care. I still made good grades. I still remained healthy. I never did anything past smoking marijuana. Sometimes I did things just to feel a rush and sometimes I did things to feel numb and cope with pain. Either way I lived life and continue to live my life the way I choose in a smart way. I know my limits and I know when to slow down but I still get as many life experiences as I can and because I did all of that I’m smarter. I know what and who to look out for. I know how to take care of myself. I know how to be a functioning adult with CHD. So do what you want within reason and remember it’s always better to beg for forgiveness than ask permission....with most things. How do you think I got away with having 11 tattoos?
If I could give myself advice as a teen though? I’d tell me it’s gonna get worse before it gets better. I’d tell myself you’re gonna slow down but don’t freak out. You’re still strong. You’re gonna go through more than any person should or has. What happened when you were three wasn’t your fault, you’re gonna date countless assholes and that football player you have your eye on? He’s gonna abuse you but you’re gonna fight through it and you’re going to come out so much stronger. You’re gonna have regrets and you’re gonna experience heartache. It’ll all be worth it in the end. I’d also tell teen me that it is a phase, you will grow out of it, stop trying so hard, being scene isn’t that cute.
I want to end this with my favorite line from one of my favorite poets of all time, Sylvia Plath.
“I took a deep breath and listened to the old brag of my heart. I am. I am. I am.”
This quote gets me through a lot. My heart is mine and it’s been working its ass off to keep me around. When things get to be too much and I feel like nothing is going right, I’m probably going to die young, everything is my fault, I stop and listen to my heart. I listen to it slow down after having sped up from the stress. I listen and feel it beating keeping me alive. I am a CHD survivor. I am a fighter. I am who I am and I love who I am.