Q&A:
How old were you when your parents first explained to you that you had a heart defect? Do you remember what they said?
I am sure that they had told me before but the first time I really understood that I was a little bit different, but wasn’t till elementary school that I got the “heart talk”. I remember my mother saying “Now remember you aren’t like everyone else, you cannot push yourself. When you are tired, you are tired so stop and take a break.” My parents never said you have a heart problem so you cannot do this or that. We never talked about it; there was no reason to when I was young because I was never really affected by it. I get told more about my heart now than I did when I was a child.
Do you remember if when you were in elementary school you had a hard time keeping up with your peers? How did you handle this?
No I never had a hard time. I ran and played at recess just like everyone else. I never felt different during physical activity. Elementary school was easy, Middle school is when it got harder because that’s when people realized I was the only one with a scar.
Do you feel different from other kids because you have HLHS?
No I don’t feel any different; I just know that I must be healthier than most teens.
Do you ride on roller coasters?
Yes! Of course I do, I love heights and scary rides. There is not a ride I won’t do!
Do you play sports?
I love sports! The first sport I played was T- ball when I was 5, then I started figure skating when I was 6 and still continue to skate. Throughout my sports career I have played basketball for 6 years, I rode motor cross for several, I threw shot put and ran track in middle school and high school I was captain of the Varsity Tennis team.
Do you take any heart medications? Do you feel any side effects because of your medications?
For my heart I am on Linsinopril which I take every day. Along with that I take Actigall, folic acid, baby aspirin (3 days a week) and Centrum vitamins and Caltratep. I do not feel the side effects from the medicine but if I miss a day then I feel side effects which are tiredness and lack of energy.
What has your doctor said to you about your heart in the future? Will you need any other surgeries?
No, no surgeries are in my future and thank the Lord! I am different than most cases of HLHS when I was born all of my stats were in the 95-98% it was like I never even had heart surgeries or a half a heart. I am so blessed to say that my future looks just as bright as any other persons. My future is up to me and how I live. I must take care of myself and know what’s good for me and what is not!
What has your doctor said to you about drugs, smoking and alcohol?
NO, NO & NO! Drugs absolutely not, I even try to stay away from Tylenol and Advil. Smoking is not even something to consider. I do go to college and of course I go to parties and out with my friends to events, but if someone is smoking I walk away or leave plus it makes me feel so sick if I do inhale it. Alcohol; never had a sip or even a finger dip. I do not want to risk it. Alcohol is just as bad as caffeine for HLHS babies. I was told to stay away from all soda drinks, coffee, teas and absolutely no energy drinks. I drink tons of water since the only way my blood travels throughout my body is by pure gravity, the water helps pump my blood around faster and better since my heart cannot!
What have you been told about birth control and having children in the future?
This is probably the toughest part about having HLHS, I could go through numerous surgeries, doctors’ visits, stress test, IV’s, anything but being told I could not have children was the hardest and most painful. I always wanted to be a mother since I was young, I wanted triplet girls and then to adopt, my mother thinks I am crazy but that is what I want. I cannot have children of my own the doctor said but there are ways around it. Surrogacy is most likely what I am going to do and is the best and really only option other than adoption. But see also I use to pray to God when I was little that he would let me adopt a little girl from Asia, well God granted my wishes. So me not being able to have children of my own leaves me to adopt a daughter I have always wanted.
Birth control has also been a sticky situation. I cannot go on the pill or shot or patch because I cannot have estrogen in my blood stream. I can get an IUD which is what most HLHS women have. But my mother is always worried that is it not 100% guaranteed protection. My Gyno is working on finding me something that is easy just like the pill; she is still working on that. My Gyno said the safest and most practical thing to do is get my tubes tied. I am contemplating that and am pretty sure I will go and get the surgery for it.
It is just a risky situation altogether because if you cannot use birth control, then if you do get pregnant your heart is not strong enough to support both you and the baby but you also cannot even think about abortion because your heart cannot handle the medicine from an abortion.
