33 years old
Briefly describe what your life currently looks like?
I am a mother of two healthy boys: Cristian 7 and Lucas 3 months old. I've been married for 12 years. I also have my own wedding photography business, this allows me to stay home and take care of my children and husband.
What is your CHD?
I have Endocardial cuhion defect more commonly known as atrioventricular septal defect (AVSD). I was born with this condition and diagnosed when I was 2 months old. In AVSD, there may be a large hole in the center of the heart where the wall (septum) joins the upper and lower chambers of the heart. The tricuspid and mitral valves may not be separate. Instead, there can be one large valve between the upper and lower chambers of the heart (common atrioventricular valve).
When did you/your parents find out about your diagnosis?
Shortly after coming home my mom started noticing that I had bluish lips, nails hand and feet, tired while feeding it was a struggle. I would break out in a sweat, cried a lot very jumpy she also noticed I had a rapid heartbeat. I had trouble breathing because my heart retained water and it would go to my lungs. She immediately took me to pediatrician who then referred us to a cardiologist.
What surgeries or medical procedures have you had to endure/overcome throughout your life?
That's when my poor mother’s world was turned upside down. Being a young women (20's) not knowing much English this was very scary for her. This was only the beginning of numerous caths, echos, angiograms, ekg. Aside from all these test’s, being away from my parents I spent my childhood in a hospital. Back then the technology was not what it is now and for that reason I had to wait until I was 4 years old to have my open heart surgery.
Tell us about your childhood memories with CHD?
It’s amazing to me that I recall so much at such a young age. I remember having my blood drawn all the time several times a day, screaming and fighting the nurses, after a while you become immune to it and you know it has to be done so you surrender. One of the things that stands out in my mind all the time is when the nurses could no longer draw blood from my arms they would draw it from my feet and head very painful, but by this point I would just lay there and let them do their job. Caths and angiograms were the worst; I would have to be in bed for days after this procedure. Keeping my leg still that's hard for a child to stay still, but my parents by my side reading and talking to me helped.
How did CHD affect your relationship with your siblings and parents? Did they treat you different? Did you appreciate this or resent it?
My relationship with my brothers and sister were never affected by my CHD. I believe it was never an issue for us because once I had my surgery it was like any normal young girl, with a few trips to the hospital once in a while nothing serious.
At any point as child do you remember resenting your parents for putting you through medical procedures?
No! I never resented them because I knew that what happened to me was not their fault. Am grateful to my parents for doing everything they could despite language barriers and lack of medical knowledge. My mom always explained the best she could the procedures I was going to endure and she would tell me that these procedures were necessary to make me better and once I had my surgery I would be able to run and play without getting ill. I don’t want to say I resent my parents, but I do wish they would have allowed me to enjoy kindergarten, ride my bike or go to the park and just run and roll on the grass. Instead I had to sit on the side and watch all the other kids have fun. All because my mom was afraid I would fall and injure my incision or re-open it . The truth is that I was aware of my problem and I knew my limits or how far I could push myself yet my mom didn’t listen. I didn’t learn how to ride a bike until I was 11years and that was behind her back. My mom was so protective even about the food that I ate she had in her mind that if she fed me liver all the time if would make me stronger so needless to say I didn’t have a hamburger and fries until I was 13 yrs for that matter I didn’t have anything yummy because to my mom it was all junk food without any nutrients. She’s right, but everything in moderation is okay =)
How has CHD affected your life besides your health? Did you feel different?
I live a pretty normal life with a couple of glitches here and there don’t feel different just aware that I have to be cautious. I feel fulfilled as a woman.
What do you consider to be your greatest accomplishments to this day?
Being a mother! Maybe to some this is weird, but to me it was the biggest gift because I was always told I couldn't have children. Now I have two beautiful healthy boys.
What fears did you have or do you have today?
My biggest fear was that my children would be born with CHD. I went through so many cardiologist and high risk OBGYN before I got pregnant to find out what were the chances of my children inheriting my condition. We were told that it was very unlikely for them to have my condition, I felt confident to get pregnant even though I knew I was a high risk.
What helped you cope with your CHD? Or gave/gives you strength?
I accepted this condition was part of me and that nothing I did would change it or make it disappear. I never felt sorry for myself or blamed anyone or questioned why me I just knew I was special. I never focused on my scars I actually call myself “scar women” I have so many scars from procedures and surgeries of course the incision down my chest is what people see the rest are hidden. What gives me strength to endure anything that comes my way is my faith in Jah knowing that one day not far I will have a healthy perfect heart.
Do you have any physical limitations? Do you expect to need further medical intervention?
Am not sure you would consider a limitation that I am scared of heights. Can't do rollercoaster’s I feel like my heart is going to jump out through my mouth. The most recent intervention was 7 years ago when I had to undergo lower extremity bypass. The reason for this procedure was because when I was small I had a numerous number of caths done. On on my right leg a piece of vein was catheterized and I wasn't getting enough blood to my feet. I noticed that my right foot was getting numb more frequently and that my toes were blue that’s when I got scared went to see cardiologist who ordered an angiogram who explained that I needed a graft put into my leg to provide blood flow. Surgery resolved the problem and am fine now. For the rest of my life I will have to have yearly check up with echo’s. And I hope I don’t have to have another lower extremity bypass because the graft either blocked or its not doing its job.
What were you told about having children?
That I wouldn't be able to have children. I was told this when I turned 14 yrs old. So for a long time until I got married I carried this I guess you can say it really didn't face me until the moment came were my husband and I wanted to conceive. That's when I started consulting different cards and OBGYN after listening to all the doctors my husband and I decided to try. We were blessed with our first son Cristian his now 7. My pregnancy was high-risk I suffered from High blood pressure throughout my pregnancy and labor was difficult 31 hours yet all worth it. We waited seven years to have our next child this pregnancy was pretty normal except for the really bad "morning sickness" labor was also critical with Lucas I was in labor for 20 hrs at that time Dr. decided to perform an emergency c-section. Our beautiful baby boy was born unfortunately I wasn't able to hold him right away because I was recovering from surgery. Once I was more alert I checked him from head to toe. That's when I discovered that his feet were blue as well as his mouth I freaked out and immediately called the nurse and pediatrician to come and check him they checked his oxygen levels which were normal and they called his blue tint "cyanosis" its very common on newborns when there circulation is still a bit immature. I was very scared and concerned because of my history that I had nurses check his oxygen almost every hour and pediatrician checked on him several times a day. I asked them to order an echo cardio for my piece of mind, but they didn't because everything was normal. Once I was released from the hospital he went to see his pediatrician who found my lil Lucas to have a murmur which was detected through his back not his chest. She immediately gave me a referral to cardiologist/ I made him an appointment with the cardiologist who treated me when I was younger I felt confident because he knew my history. Lucas had an echo done and they confirmed that he did have a small murmur that's very common on baby's. I felt better knowing they saw his lil heart and that he did not have my condition. He has to be checked in 6 months and at that time murmur should be closed if not we will discuss further.
At what age did you start feeling the need or independent enough to deal with CHD on your own? Or do you still enjoy having the support of your family?
I knew that I had a special heart that’s what my mom would always tell me and that I needed to be careful when doing things. I guess you can at a very young age. I will always need my family no matter how old you are you will always need them. This might sound a little weird, but yes I love to feel cared for and know that they are still so concerned about me as if I were a little girl.
What advice would you give children growing up with CHD?
Do not allow this disease take control of your life you set the bar don’t feel sorry for yourself you can do anything you set your mind to. Don’t be satisfied with only one opinion seek out several and weigh and then make a decision. If I would have listen to my cardiologist and mother I would have never experienced the greatest gift of being a mother.
As an adult with CHD what words of wisdom can you provide parents raising children facing great challenges with CHD?
I would say don’t smoother them because you’re afraid that something can happen or don’t stop them from doing things because you’re afraid allow them to do things to experience new adventures. I know that as parents our first reaction is to shelter our children thinking that we can protect from something happening to them. The truth is that they will grow to be their own person and make their own decision even if you don’t agree with them so why not start now.
Is there anything else you would you like us to know, about your past, present or future, or anything else you would like to share?
Not that I can think of at this time.
Wendy, you are a beautiful and strong woman, wife, mother and friend! Thank you for allowing me to interview you and be part of the Heart Mom Chronicles. I know seeing you gives me hope for my own CHD baby and I'm sure you will give many other moms that read this hope and insight into living life with CHD. Much love and happiness to you and your family!