My Story
My CHD is my life. It is all I’ve ever known and it is all I will ever know. It has shaped my life and has helped form the person I am today. Here is my story from the beginning (with the help of my parents and family members for the parts I don’t remember).
I was born in August in 1987 and I was deemed a healthy little girl. A few weeks after I arrived home my mom knew all was not well. Her mother’s intuition knew something was wrong. The signs started to show like not eating well, then throwing everything I ate back up. She took me to the doctors every week from the age of 6 weeks to 11 weeks old. The doctor would tell her the same thing that I was a mucisy baby and with time I would get better. Then came a rash all over my body. To the doctors my mom took my once again, nothing was wrong they said. Then when I would cry I’d have bluish gray around my mouth. My mom persisted to take me to the doctors and they had no answers. Finally, when I was 11 weeks old my mom took me took me to the ER of the closest hospital. They did a chest x-ray and knew immediately that there was something wrong with my heart. The doctors could only see three chambers and my pulmonary artery was larger than normal. I was in heart failure. They called an ambulance to come pick me up at the hospital to transfer me to a Children’s Hospital. The ambulance was already on its way when the doctors came out to the waiting room to tell my mom what was going on. My mom called my dad to meet her at the hospital. When the ambulance came the paramedics said that my mom couldn’t ride with them. My parents followed behind the ambulance. Once she arrived at the Children’s Hospital they waited an hour till they found out from a cardiologist exactly what was going on with me.
A cardiologist, the same one I have now, came out to the waiting room to tell my parents that I had a heart cauterization and a few other tests and they found out that I had a Congenital Heart Defect called Tricuspid Atresia. This means that I was missing my tricuspid valve which led my lower right chamber not to develop. My cardiologist also told my mom that it was a good thing I made it to the hospital because about three more days in my crib and I would have died of cardiac failure. Talk about a lot for a mother to take in. My parents were upset, but knew I was in good hands. Later, my cardiologist and some doctors put together a plan for me before I was able to leave to hospital. I was released a few days later on three medications and on a special kind of baby formula which consisted of concentrated Isomil with polycose added to help me gain weight as I needed to be near 10 pounds for my first open heart surgery, which I was to have at between 3-6 months old. My mom tells me it was a grueling task to get me to eat and keep down all my formula. She told me she would put me in my bouncer and try to get me to laugh or smile then she would take the small sireng that she filled with the special formula and put a drop in my mouth and she would make funny faces to make sure I swallowed it. This took about an hour for one ounce and she needed to feed me every hour. If that wasn’t a big enough task to take care of me and make sure I ate and stayed healthy my parents had my older brother to look after who at the time was only 4 1/2years old and carried a lot of germs that could make me very sick. I’m not sure how they got through it, it was hard, but they had family members that were willing to help as well.
My first open heart surgery was in early December of 1987. It was called the Pulmonary Artery banding surgery. It was to help the blood flow in my heart and lungs until I was old enough to have the full Fontan. All went well during the surgery. Though it was successful in its purpose it didn’t make it any easy on my parents and family. As one of my grandpas have said to me about seeing my after surgery "It was a sight to see and very scary." Because I was so sick I had about a 20% chance of dying after this surgery. As my parents have told me, hearing any percentage that your child could die is not something you want to hear, but I beat the odds.
My mom tells me of that shortly after my first heart surgery I started waking up from sedation and pulled out my breathing tube. I started struggling to breathe and my mom was the only one in the room. She rushed out into the hallway and told a nurse. The nurse said "You’ll have to wait." Well, that didn’t go over well as I could die and my mom told the nurse that either she calls a code blue or she would do it herself. . The nurse looked into my room and as soon as she saw me a code blue was called. My cardiologist and my surgeons came running down the hall. My mom said she felt like she was in a movie as it felt like forever for these three men in white coats to get there as she was trying to stay calm. Of course, everything turned out fine. My two surgeons weren’t happy with the PICU nurse who took so long to call a code blue. My mom says that she was moved out of the PICU unit.
After just a ten day stay in the hospital, I made it home in plenty of time for my first Christmas. Unfortunately, my parents got a scare in early February when I came down with RSV. Fortunately, after one week in the hospital I fully recovered. One thing my mom told me about my bout of RSV. She told me that she called cardiology at Children’s Hospital they told her to take me down to ER and they would have nurses and my cardiologist waiting for me. Well, when she got down there no one was waiting and she asked the receptionist what the situation was, nothing. She ended waiting with me in the waiting room with me for almost five hours till someone came and got a room for me. Then, they had a incubator bed waiting for me and my mom had told them a bed with rails is what she wanted. Well, that wasn’t what a doctor said and they argued, finally my mom got what she asked for, as I liked the bed more than the baby crib.. To top it off all the special milk my mom had brought with her for me had gone bad. My mom is a strong woman to go through all that holding a sick baby.
After my run in with RSV I thrived and did very well. I was a happy baby and smiled a lot. Unless my parents told people, no one knew what all I had gone through just to be here. I was a fighter. I was also a daddy’s girl and still am. I loved my daddy so much that the first three or four years of life I wanted him to carry me every free second he had. I also loved my mom and would mimic things she did like vacuuming. I loved my big brother and protector as well. I was always following him. Despite my good health I was still in danger of getting really sick and was still on a high number of medications. My parents did a wonderful job of keeping me healthy and gaining weight so I could be ready for my second surgery called the Fontan Procedure. They told me that they would bribe me to eat good food by holding a small donut in front of my mouth so it would open, then they shoved the healthy stuff in.
I was also born with an eye muscle problem called cross fixation that led me to wear a patch on my eye to make the muscles stronger. I also got my first pair of glasses at 6 months old. In November of 1988 I was admitted to Children’s Hospital for my first eye muscle surgery at 15months old. It was outpatient and all went well. Then, less than a year later, in September of 1989, I go back Children’s Hospital for my second heart cauterization. I wish I could say all went well and I was released the same day, but it didn’t. I developed a blood clot in my right leg. I’m sure my parents were happy it was caught and treated in time, but the emotions of something that serious were there. I was monitored for four days in the hospital while I was given medication to treat the clot. I was released on the fourth day.
My parents didn’t even get to collect their thoughts as less than two months later, in November of 89, I was back at Children’s Hospital for my second and most dangerous open heart surgery. I’m not sure exactly what the mortality rate was but it was pretty high for this type of surgery at the time I had it. The surgery went well, but I did spend exactly a month in the hospital. Now, I don’t remember anything, but sitting in a big red chair with my test tubes and wires still in me. I remember being in pain and crying. It is a sad memory for me and one I don‘t like to relive. Those aren’t the kinds of memories kids should have, but when a kid is thrown into the medical world it is a kind of memory that happens. It is a part of me and I except that. As for my parents, they have told me a few memories of the hospital stay, two that stick out. It was one of the toughest months of their life they said.
My dad tells me that a week or two after surgery I had to start walking again to get the blood flowing and prevent blood clots. My mom didn’t want to do it as she couldn’t stand me in pain. My dad took the job. A nurse along with my dad would take me into the hallway and give me a walker. Then, my dad would hold my blanket in front of me. My dad would tell me to come get it and I would cry and take a few steps. Every time I’d get close to my blanket, my dad would pull it back. My dad said it was heartbreaking to see me so unhappy and in pain, but it had to be done. He knew for my own good and health I had to walk again.
My mom tells me about how I was put on a medium chain triglyceride diet. It was hard as I loved cookies and it was not allowed on that diet. Well, one day while my mom was sitting next to my hospital bed, I keep asking for a cookie. My mom’s heart broke. That night when she went home to be with my older brother and my dad stayed the night with me in the hospital my mom was determined to make me cookies. She bought medium-chain triglyceride oil and found a recipe. The cookies came out hard as a rock and tasted nasty.. So, she put a whole bottle of cinnamon in the mix the next time around. They were better, but still hard as a rock. My mom got the idea to wet a paper towel and wrap it around the cookie and heat it in the microwave. This made the cookie soft for a few minutes. When she got back to the hospital to see me, she heated one up and gave it to me. I took one bite then held it and smiled. My mom said I never took another bite, but held that cookie for dear life. She says the smile on my face was priceless and was worth every minute of trying to make me those cookies.
I was discharged from the hospital four days before Christmas in 1989. My family had every reason to celebrate. I did too! I got out my mom’s lotion the day I got home and went to town putting it all over myself. I was happy and alive. What more could my parents and family want?
After that second surgery I was healthy, well as healthy as you can be having a heart condition. I was still a daddy’s girl, I was still a mommy’s girl, and still looked up to my older brother. I had years in between the second surgery and any minor concerns. I went to my cardiologist once a year and was on a few medications, other than that I was doing great. I had another eye muscle surgery when I was seven, I got four stitches in the my bottom lip from getting hit be a swing when I was eight, and I had a bad dose of the chicken pox when I was ten, but that was really it. I got a little brother when I was eleven and that was wonderful, I'd hold him as much as I could and he and I are very close. When I was six my mom got me into acting classes. I was in plays till I was twelve when the family theatre group closed. I enjoyed being on stage and it made me feel on top of the world. I even received a few starring roles with lines. It is something I will always remember; even my mom was in the plays with me! For my parents and family to see me up on stage happy and alive was so extremely exciting for them. I was blessed and still am. As I got older I knew I was different, my parents explained the best they can to a young child what was wrong with me. My mom and dad would always tell me to listen to my body, if I was tired in an activity then stop or if I didn’t feel right then tell someone right away. I became very good at this and I was lucky to have great teachers growing up that would let me sit when needed or help me out if something was wrong. As for the social experience of elementary and middle school that was a whole different ball game.
At home I felt safe and happy, but at school I felt like an outsider. The earliest I remember feeling this way was in Kindergarten, my second one to be exact. Yes, that’s right I went to Kindergarten twice (public and private kindergarten) because my mom felt I wasn't ready emotionally or socially ready to move to first grade. I needed some time to adjust to school. School wasn’t an easy thing for me to get through growing up. I was the one that kids teased. I was teased because I wore glasses, because I was so shy, and because I was different, they knew I was. Kids can be mean. I remember having to sit out in gym class and having kids ask why I got to sit out and they couldn't. I’d tell them and they wouldn’t believe me. At some point I just stopped telling them I had a heart condition, what was the point. I think recess had to be the worst part of my school day for a long time. I would sit there and watch the other kids play. I had no real friends. Yes, I had people who were nice to me during school, but never asked me to play. I would try playing with others, but I would somehow get forgotten. See, I had a real friend in first grade, she had the same name as me, but I switched schools for second grade leaving me to try to make friends. I didn’t have another real friend till third grade. Even then I would still sit and watch others play. Sometimes my friend would sit with me, other times she wouldn’t. It wasn’t until fourth grade that I started to be more accepted. Even though I was accepted in school and I did have a few friends from fourth grade up, I never truly felt like I fit in. Socially, high school was better for me. I was never in the popular group and had very few friends I could count on, but I was ok with that. Sure, it would get me sad sometimes, but honestly, I never wanted to be in the popular group anyways.
In my sophomore year of high school I joined the girls’ varsity bowling team. My parents had gotten me into bowling when I was young as that was the only real sport I could play. I was so excited that it had became a varsity sport my sophomore year. I was part of the first ever girls varsity bowling team in my school. I was one of the best bowlers on the team holding a 145 average by the time I graduated. I got my varsity jacket and my senior year was Co-Captain of the team. I was so happy that I could play a sport at my school. Having a heart condition I was told I couldn't play any sports, so when bowling became a sport, it made my high school experience one I will always remember.
My health issues changed and have never been the same since the summer I turned 17. It was early in the morning after my little brothers season end baseball game and party that I woke up feeling very itchy. I thought that I just had a few mosquito bites, but I turned on my bedroom light just to be sure. What I saw scared me to death. I had hives all up and down my arms. I then continued to check the rest of my body and sure enough I was covered from head to toe in hives. I cried myself back to sleep sitting up. Later that morning my mom went into my room to find me sleeping sitting up. She woke me and asked if anything was wrong, I showed her and she was beside herself. I was taken to a doctor and he said a low dose of steroids would do the trick. So, he called my cardiologist up and he agreed, but I had to be taken off all my heart medication. That scared my mom and me.. I was watched closely for a week. After a week still no change really, so off we went to a different doctor. She said a higher dose of the steroids. She talked with my cardiologist and he said ok. I had to also watch what I ate and got some blood drawn to be checked for all sort of allergies and other things. After a few days I was feeling better and the hives were gone, but one morning after taking a Motrin I broke out even worse this time. Off to my cardiologist I went. He was concerned. He ordered some more blood testing. Every blood test came back negative. I was then told not to take any pain killers, upped the steroid dose, and watched closely. Finally, the hives went away again and I was feeling good and having lots of energy due to the steroids. After three months on the steroids and no more outbreaks, I started taking my heart medication again. I have since never had another outbreak of hives. They never found out what caused it and they said they may never know. The chances of it happening again are really slim.
A year after this outbreak I started having symptoms that were not normal for me. I wasn’t sleeping well, getting night sweats, chest pain, faster breathing, and tired more often. This was all happening during my senior year and a lot had just happened and was still happening at school and with my family so I thought it maybe stress, but I went to see my cardiologist earlier that year anyways. I was put through my usual tests which includes an EKG and an Echo. Everything looked fine, but he told me that the stress test I had the year before showed some SuperaVentricular Tachycardia (SVT’s), but since I did complain for any chest pain and it was minor he didn’t seem concerned. Now, that I was receiving chest pain or heart palpitations it concerned him. So, he put me on a low dose of a beta-blocker (which calms the vessels in my heart so I don‘t get chest pain). Great, more medication I thought, but it was for the best.
Then, a year later during my freshman year in college I had a weird episode of the chills, being really hot, chest pain, shaking, and light headed. This happened at school and I was scared. My mom picked me up and after taking a long nap I was fine. I went in to see my cardiologist a month later and told him. He said if they don’t happen all the time then it is most likely stress, but to keep an eye on it. Well, months later, during my second year of college, it happened again and again and again. Then, I was just having the chest pain part. I e-mailed him and he sent over an event monitor which is put on and when I have an episode of chest pain to record it. I did. The results looked normal for me. I went in to see him and he said I could up my dose of beta-blocker if I wanted. I never have.
I had my third eye surgery in July of 2008 and all went well. I thought I may have caught an infection of the heart as I got chest pain a few days after surgery. I e-mailed my cardiologist and told him all my symptoms. He said if I wasn’t running a temperature, then I was fine and just watch it. He also said that I could still up my dose of my beta-blocker, but I never did. The chest pain slowly went away.
As of now I still get chest pain every now and then and tire out easily, but never upped my dose of beta-blockers and I hope it never happens. I am always concerned about the side effects and long term side effects. I am a known worrier and probably always will be. I think it comes with having such serious health issues.. I have moments were I'm scared about my future which can lead to a mini meltdown. I let my emotions speak by writing poems which I have been doing since I was about 14. I also love to listen to music as it is very calming for me. I honestly owe my life to not only my wonderful parents, but also to the skilled surgeons, doctors, nurses, my extended family, my brothers, my friends that I have held close the past few years, and even kind stranger's. My family and my friends have been there for me when times were rough, whether it be my family issues or my health issues someone was there and I honestly couldn't have done it without them. I also believe the prayers said for me have made all the difference in the world. I’m Catholic and hold onto my faith dearly. My faith is a strong hold for me. I will never lose hope for my future and for a future cure for CHDs. I don't want to see another precious soul leave this earth too soon because of it.
I do tell most people I meet about my heart condition, mostly because if anything happens they know and since I've been in high school to now the reactions vary. Some seem shocked and overly concerned, some blow it off and say that I must be fine now that I'm fixed, some take it seriously but aren't asking me every two seconds if I'm ok, and some don't really say anything. It's always interesting to see people's reactions. I even try to fit in some CHD awareness in my talk with them too. I'm not a fan of those who blow off my heart condition thinking I'm fine now, because I'm not and I never will be. Just because you get older doesn't mean your CHD goes away or is forever fixed. I wish more people could understand that, but unless you've walked in my shoes I don't think they can fully understand what I go through just like I can't fully understand their life. I will always have to take my health into concern with everything I do and I've accepted that.
I know that my loving parents and family have enjoyed seeing me grow up and succeed. They continue to want the best for me and I know it scares them at the thought of something going wrong with my heart, but like me they cling to faith and have no doubt that I will have a bright future. I’m working at that bright future now as I am currently still in college and working to the best of my ability to graduate. I don’t exactly know what I want to do career wise, but I would like to make an impact on the world in some way. I know do just that.
After all I’ve been through and all I will continue to go through, there is not one day that passes that I am not grateful to be alive. Sure I sometimes which I had a normal heart and live without health issues, but if I had been given the choice to take the life I’ve been given with all the struggles or have a normal heart, I’d choose what I have now. Maybe I’m saying that because I’ve known nothing else, I’m not sure. One thing I do know for sure is that with my strong faith, loving family, and great friends I will continue to get through each struggle. Till my time on earth is over I will brave what is thrown at me and handle it in a Lauren fashion knowing everything happens for a reason and turns out like it should. I may have a CHD, but I won’t let it stop me from living my life to the fullest.
Lauren Celeskey