for them every so often. Don't just wait for Valentine's
Day to do it!
Today holds a different meaning for some...
including myself. Today is
National Congenital Heart Defect
Awareness Day or Heart Day.
Today celebrates ALL CHDers... young AND old... as OVER 50% of CHDers are Adults. Today we spread CHD Awareness, remember the CHDers young & old who have gone before us, the surgeons who made all the life saving CHD surgeries (the 1st one all the way back in the 1940's!)... & ALL CHD surgeons as well as Cardiologists..... to thank the older CHDers for being guinea pigs (I'm part of an Adult CHDer group, so I will do just that... but in a way I was a guinea pig for Single Ventricle Fontan-ers... the Fontan had only been around 17yrs when I had it.)...AND today is a day to also celebrate CHD Parents because without them, their would be a whole lot less of us CHDers. ♥
Being an Adult CHDer... I thought I'd share how much
CHDers especially the complex CHDers like myself go
through by the time they hit my age... and so you
know, my list is in the middle as I know MANY CHDers
with longer lists, but others with shorter ones...
the point is... ALL of our lists is more than most Adults
will ever go through in a lifetime.
My List... So Far (I have Tricuspid Atresia, Hypoplastic
Right Heart Syndrome...22yrs Post Fontan):
-2 open heart surgeries
-2 heart caths
-RSV days after being discharged from my 1st OHS,
so I was re-admitted for about few weeks
-1 blood clot in right leg after 2nd heart cath
-2-3 code blues (1 for pulling out my vent tube...
so naughty, 1 for a dangerous tachycardia ep..)
-3 eye muscle surgeries (I have eye muscle disease w/weak eye muscles)
-Walking Pneumonia once (that was fun... NOT)
-6 stitches in my bottom right lip (my fault...
I was 7 or 8)
-BAD case of Chicken Pox
-BAD food poisoning w/a few hour ER stay & IV fluids
-Over 3 months of my life spent in patient in the hospital
-About 100 Cardio appointments (maybe more)
-Hundreds of pokes, prodes, tests, an
-Hundreds of doctor appointments for my heart, eyes, back (I have congenital scoliosis), & primary (sick appts)... oh let's not forget the dentist
AND 1 1/2 of braces
-I've taken countless amounts of antibiotics
-Been on at least 20 different medications in my
life so far.
.maybe more, idk (NOT all at once though... usually 5 or 6 at the most at a period of time... right now I'm on 3)
-I've had countless night terrors since I was little (between ages 2-10 they were BAD)
-I've been battling an Anxiety disorder for years... but I will NOT let it rule me!
-And currently having some heart beat and heart rate issues that I'm trying to get to the bottom of (have a history of Tachycardia/very fast hear rate as well.. on meds of it)
AND out of everything I've been through... I have about 22 scars or badges of honor on my body... 12 on my chest from just my 2 open heart surgeries.
I am a PROUD CHD Survivor! ♥
I may physically have "half a heart" but I do NOT have half a life!! ♥
The one thing I LOVE about being an Adult CHDer, is
spreading Hope and supporting CHD families anyway
I can.
***I'd like to share pictures and some information
about some of the AMAZING CHD kiddos
(and their AMAZING families!)...
(this is just SOME... I've made MANY
MANY friendships with CHD families I will ALWAYS
Cherish!!)
I gave inspiration, love, support, and friendship which
made my mended heart so full of joy... BUT what I got in
return was even MORE special to me... I received
inspiration, strength, friendship, hugs,
and support.
These CHDers and their families will FOREVER
hold a special place in my heart... and I've made some
FOREVER friendships!! I gave Hope to these families for
their CHDers, that CHDers CAN grow up... (even those
with "half a heart"), and live a VERY fulfilling life!!
<3 ~ <3
This is Londan. He has Hypoplastic Left Heart Syndrome (the opp of me). He was 10 when I met him and his family for lunch. We got along very well. He is full of life and an overall spunky kid. He thought it was pretty cool I had scars on my chest too. The thing that touched me was when his mom told me that he said in the car on the way home that since I’m missing the right side of my heart and he is missing his left, that together our heart makes a whole heart. Beautiful. Today Londan is 12 years old, thriving, still full of life, and still full of smiles.
<3 ~ <3
This is Megan. She has Tricuspid Atresia, Hypoplastic Right Heart Syndrome like me. She was 6 when I met her and her family. She was very shy at first, but that is ok… actually it took me back to my childhood as I was super shy too. She opened up towards the end of dinner and hopped on my lap. She can’t wait to meet me again and I can’t wait to meet her again. Megan is just full of life! Today she is in 1st grade, doing awesome, living life, and will be 7 soon.
<3 ~ <3
This is Kyleigh. She has Tricuspid Atresia, HRHS like me. She was 8 when I met her and her family. I had known her mom for a year before we got to meet in person. Her mom, Crisse, and I talked ALL the time on the phone and I talked to Kyleigh a lot on the phone to… so when we FINALLY got to meet in person… it was AMAZING! I love Kyleigh like a little sister and her mom, Crisse, has become one of my best personal friends. I wish we lived closer to each other though… but we talk all the time via phone. Kyleigh is so full of life and just a spit fire! Love her! She is 9 years old now and considers me her big heart sister forever… and that makes my heart melt. Kyleigh is full of life and full of smiles!
<3 ~ <3
This is Hope. She has Hypoplastic Left Heart Syndrome (opp of me). I knew her mom via internet since before Hope was even born! Hope’s mom found my blog, left a comment, and from there we have had a nice friendship and I feel so special I could offer her hope for Hope. Hope was almost 2 when I met her. She was a tiny thing, which I was tiny too. But boy lots of energy, curiosity, and love for life is packed into such a small package. She is on the go! My favorite moment was when I showed her my scar, than pointed to hers… she knew as she pointed at mine than at hers. She is 2 now and doing amazing despite some weight gain issues.
<3 ~ <3
This is Joshua. He has complex CHDs. He was 2 when I met him. He played the whole shy yet I’m going to still look and smile at you cute game… adorable. He was more than happy to sit on my lap, smile at me, hug me… watch out Sarah he is a ladies’ man hehe. ;) Joshua is full of life and is wise beyond his years as you can tell through his eyes.
<3 ~ <3
This is Bayden. He has “pink” Tetrology of Fallot & 3 other CHDs. He was 2 when I met him. He is a spunky little thing! He is curious, adventurous, yet gives you a smile that melts your heart. Brittany you have a ladies’ man too hehe. ;) Bayden likes what he likes and has a kind spirit. He enjoyed sitting on my lap and taking pictures with me. He is full of life and full of energy! Amazing!
<3 ~ <3
This is Jilliana. She has HRHS like me. She was 2 when I met her. She is adventurous, curious, and full of energy. She smiles a lot and knows what she wants. She was so sweet and enjoyed sitting on my lap… she seemed to like me. Jilly has a love for life and exploring. A cute moment during lunch is her eyes lightening up at the big cookie we gave her, yet she enjoyed eating my chips more… she sure loves to make friends… what a cutie. Amazing little girl she is.
Hope = is a virtue defined as the desire and search for
good...difficult, but NOT impossible to attain
My parents always told me to not
let my "half a heart" CHD define me...
The always wanted me to DANCE (LIVE)
every chance I could in life since I was given the
chance to be able to grow up...
So to all the CHDers, young and old:
No matter how long you are here...
DANCE when you get the chance!!!
***Here are 4 stories of HOPE!!...
Cissy's Story:
I was diagnosed with Tricuspid Atresia when I was three months old and had my first open heart surgery very soon after. Tricuspid Atresia is a type of congenital heart disease in which the tricuspid heart valve is missing or abnormally developed. The defect blocks blood flow from the right atrium to the right ventricle. I'm not sure exactly what when on during that first surgery. I believe there was a vein taken from my right arm and put somewhere in my heart. Now you can't get a blood pressure reading from my right arm.
Years went by and all the time I was waiting to have my second surgery. Have you ever heard that saying.. When you’re young you think you’re going to live forever? Well I think that is a luxury kids with CHD never have. As a child I was always sick. Almost any kind of physical activity made me have arrhythmias and then I would always throw up. Just walking to the playground at my elementary school was hard on me. I hated PE because there was no way I could keep up with the other kids and if I even tried I would get sick. When I was seven I went in for my second open heart surgery. The fontan which if you don't know is a palliative surgical procedure used in children with complex congenital heart defects. It involves diverting the venous blood from the right atrium to the pulmonary arteries without passing through the morphologic pulmonary ventricle. I'm not really clear about what all that means myself but it was done to me and to my care bear. He was all bandaged up too when we came out of surgery. Even after this surgery I still could never keep up with the other kids and became sick very easily. I wish people would have been more educated about my heart condition back then so that school would have been easier for me. Even through middle school and high school I had a hard time keeping up with other kids my own age. I did eventually drop out of high school, but I think if there had been some exceptions made for me it would have been easier for me to try and finish.
The older I got the more I learned to do what I could and to take my time doing things. I worked full time at a retail store until I was around 25. I had started feeling really bad so I went to the doctor and found out my heart had become enlarged and I was going to have to have another open heart surgery. My first thought was just not to do it. I really thought I could be content with just living until I died which the doctor said would be about a year form then if I didn't have the surgery. I know how crazy this must sound but all my memories from being in the hospital before were bad and I didn’t want to go through that again. With very much love and support from my friends and family I did have the surgery in June of 2002.
After the surgery my doctor said that my heart had become as big as a basketball so they'd had to cut some of it out and do some reconstructing to it and I had a maze procedure done. In maze heart surgery, a heart surgeon creates multiple cuts into the upper part of your heart (atria) in an intricate pattern, or maze. Your surgeon then stitches the incisions together to produce scars. Because the scars do not carry electrical signals, they interfere with stray electrical impulses that cause atrial fibrillation. This restores your heart's regular, coordinated heartbeat. I had a hard time recovering from this surgery. I was in the hospital for almost two weeks. After coming home it took me a long time to recover in general. I did not go back to my full time job, I didn’t physically feel like I could handle it anymore.
I was okay for a while after this surgery but then I got really sick in March of 2003. My stomach got really huge and I couldn't get out of the bed some days. So again I went to the doctor, and if you don't know I've had the same cardiologist since I was three months old . We've been through a lot together and kind of have a love hate relationship. I think because I'm not a good patient. I always want to do what I want to do not always what she thinks I should do. I do trust her with my life and she is usually right, but this time in the hospital she didn't know what was wrong with me. So I was admitted and stayed for a week while they ran tests on me, and I've had so many catheterizations that they can't go through my legs anymore due to scar tissue. They have to go through my neck which really hurts if they don't knock you out all the way.. After a week they decided I was in heart failure and that all the fluid from my heart was just kind of sitting at my stomach instead of going to my ankles like most people. I was sent home and told to live like a slug until I could come back the next week and have my pacemaker implanted. So on April 3, 2003 I got my first pacemaker. I have to say I love my pacemaker. I can’t remember the last time I really got sick from doing physical activity, I wish I had a pacemaker my whole life.
In May of 2004 totally against the advice of every doctor at Duke I gave birth to my son. The doctors only gave me a fifty percent chance of survival during childbirth. They didn’t know how my heart would react to pregnancy. I had a hard pregnancy and was on bed rest for most of it. I had to go to Duke every week for blood work and an echo sound. My cervix became incompetent and my doctors would do nothing to stop the baby from coming because they felt my body knew I couldn’t handle the pregnancy and was trying to get rid of the baby on its own. I had my baby when he was just 24 weeks along, he weighed 1 pd. 11ozs. He is seven now and doing very good. Since then I've had my pacemaker changed once, in October of 2010.
I pray every day that my health will continue to be stable and I will get the chance to see my son grow up.
Yasmin's Story:
Hey There. My name is Yasmin and I am 26 yrs old, and I was born with a heart condition calledTetrology of Fallot. I have had two open heart surgeries and I had my first one at the age of three and my second at the age of twenty.
When I was born, my parents were wondering why I wasn't a pink baby! I was a "blue baby" and I stayed blue for a very long time. My Drs ran all the tests such asX-rays,ECHOs,EKGs, andCT scans; they didn't find anything in the X-rays, but when they did the ECHO and the EKG they discovered that I hadVSD (Ventrical Septal Defect also known as pinhole)and ToF (Tetralogy of Fallot).
I was closely monitored while growing up and I was fine until the pinhole in my heart didn't close on its own and the Drs had to surgically close it. My first surgery was atChildren's Hospital in Los Angelesin 1988 and the Drs closed my small VSD (ventrical septal defect) and they put a homeopathic conduit it to connect the left and right side. I was told that because I was growing that the child's size wouldn't fit and this is why the Drs put an adult conduit in. On a return visit for a check-up I got the petal stuck on the sink (they had the ones where you stepped on the petal and washed your hands), and so they moved us to a new room. In the second room I was playing on the bed and my Dr had his hand on my head so that I wouldn't bump it. The bed had a storage area under it. I was doing great, and the Drs said " I would have to have a second one at the age of thirteen" but I didn't need it then because I was growing perfectly.
By the time I was twenty I was already showing signs of needing another open heart surgery, and the reason that my Dr and my parents came to that conclusion was because I was pale and my blood pressure rose (it was 300/91, or 200/90). I was 20 years old and on blood pressure meds. In November of 2005 I went in for my second open heart surgery where they replaced my conduit and they also put a metal stent in. They used the stent to widen my arteries that were small and narrow and they also replaced my pulmonary valve. This was performed atUCLA (University California Los Angeles)by my surgeon, Dr. Hilal Laks who did a wonderful job. However, during my second surgery I had a few complications: like my heart was sticking to the sack that holds it in place so it doesnt hit the ribs, and that was bloody. Then a few days before I was supposed to be released my white blood cell count flew through the roof. I then somehow had gotten an infection and my left lung filled with fluid and collapsed. The Drs drained it and I was released November 25, 2005. a.k.a Thanksgiving Day.
I am currently doing great health and spirits.
I have just married my soulmate on July 10, 2010 and living life one step at a time.
I found my heart as a blessing, and it has taught me compassion, love, and wisdom.
Julie's Story:
My name is Julie Ann and I am 29 years old. I am a daughter, sister, and a friend. I graduated from high school in 2001 and in 2003 I completed and received my degree in dental assisting. In 2005 I completed and received two Associate Degrees and most recently, December 2011, I graduated and received my Bachelors Degree in Psychology. I currently work as a dental assistant at my dad’s dental practice and I am also a part-time nanny for a single parent family. I enjoy sleeping as well as reading great books, doing outside activities, a good workout at the gym, being in the mountains hiking and camping. I also enjoy quality time with my family and friends.
I am also a warrior and a survivor. I was born with a congenital heart defect, which was diagnosed at three months of age, and have had three open-heart surgeries with numerous other minor surgical procedures within the years. I was born with a single ventricle, HRHS (hypoplastic right heart syndrome), which means that I am missing my right ventricle or that it was underdeveloped, and numerous other anomalies. My second open-heart surgery was when I was three years old and my last, and hope to be final, open-heart surgery was when I was eight years old.
My entire family all played their roles in helping me get my strength back after each of my surgeries. My parents raised me to be the active young child not afraid of anything in life. Sure they had their doubts on whether or not I can physically do something, but they always allowed me to try and most times they watched me succeed. I succeed in many things and even have done more than anyone had ever imagined I could do. Through all my struggles I gained fear of needles and endless visits to the doctor. As the years went by my parents and doctors taught me about my health. I now understand why I was constantly tired, screaming and crying when I was just at the normal routine checkup visit with the cardiologist. Today, I embrace them knowing that I am still alive considering what I have been through and blessed with.
Being a Psychology major I had to study about health, depression, labels, as well as many other psychology topics. I have never been too open about my health up until recently. My family and extended family always loved me and supported me when I dealt with medical issues. My friends at school always have known about my scar and knew something was wrong with my heart but they don’t know the extent of my condition. Opening up has always been hard on me emotionally and physically. I was afraid by opening up that I was just putting a label on myself, which I did not want. I had the option of receiving special education services all throughout my schooling but my parents always had denied it. In elementary and middle school I had tutors but they were outside of the school so my peers never knew about my additional help.
Throughout the years I opened up about my health so I can share my story for another family going through the same thing. I love going into the cardiologists office and giving all the other parents hope for their children. My parents never had much hope for me and never knew about the future of my health. Today, technology has advanced and there is that hope for babies born with a heart condition. When a stranger asks me about my scar on my chest I set my fear aside and embrace it and share my story. I don’t like to say I’m a survivor but I am. This condition doesn’t heal by itself and doesn’t go away over night, it stays with me every day and I have learned to embrace it. I believe that we are all given a hand of cards when we are born. I believe I was given the dealt of cards I was given to show strength, courage, and hope for my family as well as others. Going through medical procedures is hard emotionally and physically but I am strong not only for myself but for my family as well. My family also has their way of dealing with my medical condition, whether is to show me that I am a strong person and they are there supporting me and helping me through all the obstacles.
Since I found out about my late uncle’s health I have always believed that I am living life for him as well as myself. My late uncle was diagnosed with Teteralogy of Fallot at a young age and he lost his battle at only six years of age. His diagnoses and death affected my father and his family and they continue to keep his memory alive. When I was born, I was told that we looked similar and that my diagnoses could be similar to his. My dad did not remember what his brother’s symptoms were, but since he has some medical knowledge he knew that something was just not right with my health. Also having an older sister five years of age, at the time of my birth, my parents realized that something was wrong since my older sister did not show any symptoms, at my age, that I was showing then.
My story doesn’t end here. My story continues each day and at beach doctors visits. There is a greater hope of survival into my late adulthood since technology is rapidly advancing. There is even hope of one day achieving my dream of becoming a mother naturally. Throughout all the years I have been able to reflect on my life, my struggles, and my health. One thing that will never change is that I am human and have feelings. I am thankful for each day that I am given to be sharing with my family and friends. I always say I may have half a heart, but my heart is full of love for life. I am thankful for all opportunities to be able to share my story and struggles with. ~Julie
Julie's E-mail: Jewles702@gmail.com
Alexia's Story:
I was born December 29th,1985 at 2:35 am. I was born by C-section at 42 weeks gestation I was prenatally diagnosed with hydrocephalus and it wasn’t until I was a day old that I was found to have Double Outlet Right Ventricle, Multiple VSD’s and Mild Pulmonary Stenosis as well. At 2 days old I had the Pulmonary Artery Banding done. I was hospitalized for a month after that. At six months old I had the Blalock-Taussing shunt put in and I was hospitalized for 2 weeks following that surgery.
When I was eighteen months old, circumstances changed as did my living situation. I now was in an area that had access to better medical care. I was now seeing a cardiologist in San Francisco named Dr. Stanger. Shortly after I began seeing him, he told my mom and grandmother that there was a pediatric cardiologist in Sacramento and that I should be seen by him because it was much closer and much easier than making the 2 ½ drive to San Francisco every six months.
So by the age of 2 I was seeing a new cardiologist in Sacramento. He was kind and patient and dealt with the incessant questioning by my grandmother. In more recent times it was a joke in our family that Dr. Juris was scared of my grandmother. My mother allowed my grandmother to ask most of the questions when the three of us went to the appointments.
When I was four, it became clear that it was time for me to have my Double Outlet Right Ventricle repair. It wasn’t clear what options the surgeons down at UCLA would go for. So in June of 1990 we drove down to UCLA with my grandmother’s husband and my uncle.I had a cath done to check the pressures and so that the surgeon who would be operating on me had an idea of my cardiac anatomy. After the cath my family had a meeting with Dr. Hilel Laks who was to be my surgeon. Dr. Laks was torn between the Fontan and a new experimental surgery that he thought I would be a good candidate for.
So we were sent back home so that he could do his research now that he had an idea of what my cardiac anatomy looked like. In Early August we went back down to UCLA where Dr. Laks told us that he thought I would be a perfect candidate for the experimental surgery he wanted to do. Apparently I was his ginuea pig.
My Double Outlet Right Ventricle repair surgery took 10 hours. The recovery from this surgery was rough and I coded twice during the 3 week long hospital stay. But finally the day came to leave the hospital and go back home.
The kitten was a gift from my grandmother’s husband after my surgery at 4 ½.
When I was six, I was kicked out of the special education class I was in. My teachers said that I was too bright and that staying in this program would severely limit me. The goals that were set for me at IEP meetings were being frequently met and exceeded.
When I was eight years old I caught pneumonia in February and I missed 2 months of school. Thankfully I was able to remain at home with no hospital visits. Two years later when I was 10 years old I caught pneumonia again. This time I was home for a moth.
Also this time my mother attempted to admit me to the hospital. My mother took me to the registration desk at the hospital and told the lady behind the desk that she (my mother) was admitting me. At this time my cardiologist, Dr.Juris happened to walk by. He asked my mother what she was doing and my mother told him that she was admitting me. He told her that she cannot admit her own child. He listened to my lungs and my heart right there in the middle of the hospital lobby. He told my mother that I had pneumonia and that he would call in some meds for me.
About six months later I went in to see my cardiologist and he ordered a cath. After the cath he told my mother that I needed an aortic valve replacement. My mother told him no and that I was doing too well for her to put me through that. My mom lived in denial until I was 12. Then it was almost too late.
Winter break during sixth grade was hard. I was filling up with fluid. I was coughing a dry cough and dry heaving. I was also sleeping on 6+ pillows because I couldn’t breathe. I was also sleeping in a strange fashion. I would sit Indian-Style and then lean over with my hands tucked under me. I knew it was heart related but no one else seemed ready to believe that. I underwent test after test to see if anyone could figure out what was going on. There were doctors considering a GI issue so I was hospitalized for that. Tons of bloodwork was also done.
It wasn’t until the beginning of February that I voiced my thought to my grandmother. We were walking the halls. I was in my wheelchair with my grandmother pushing me. I said “What if it’s my heart?” My grandmother immediately said “It’s not your heart” On February 5th, I proved I was right.
I was drinking fries and a chocolate milkshake when I aspirated. The last thing I remember is doctors shouting orders. They were demanding drugs. I was on the vent for a week before the surgeon came to my family and said that I needed an Aortic valve replacement on that day or I was going to die.
That afternoon I was rolled into the OR. 12 hours later I came off of the OR table. I was in no means out of the woods yet, but I was stable.
I continued to have problems. My sats were so unstable that I couldn’t be moved without my sats taking a significant nosedive. As a result of that I developed a Stage 4 bedsore on my tailbone that will never fully heal. I was on the ventilator for a month and the first solid food I ate when I was finally off the vent was green grapes. I don’t think green grapes had ever tasted that good.
2 weeks later, on March 19th I was discharged. I could not return to school until seventh grade but thanks to the kindness of my teachers, as well as my grandmother’s tutoring I was not held back.
When I was sixteen I began dating an old friend of mine. It was a whirlwind romance and he proposed after 2 months together. A week after he proposed, I called it off knowing that I was no where near ready for marriage. We dated for a little bit after that but then we called it quits. We still remain good friends to this day.
In June 2005 I was told by Dr. Juris that I would need a second Aortic Valve replacement. I was heartbroken as I was told when I was 12 that the first replacement should last 10-15 years. However I was starting to experience symptoms that were indicative of heart failure. Dr. Juris wanted to do this at that point because my right ventricular function was still really good.
June 13th,2005 I had my heart cath. Because I was second case I had to stay overnight at the hospital. In the weeks that followed it was decided that we would go with a mechanical valve this time because the valve life was 25-30 years. The only drawback was Coumadin and the frequent blood draws that I would need. I decided it was worth it to avoid surgery for a long time.
They attempted a Cardiac MRI during the month of June as well but I freaked out. They had had to adjust the leads on my chest several times and then push me in and out of that tiny tube multiple times. I informed the techs that I was going to throw up. They got me out of there and then I sat up and the room seemed to swim. I was a hysterical mess. I was crying and begging them not to make me go back in that tube. Even after a Valium I flat out refused to go back in. The next day I had a Cardiac CT and the only issue there was the techs wouldn’t listen to me when I told them where to put the IV in for the contrast dye to be administered. This resulted in nearly 30 minutes of sticking me. Finally the radiologist himself had to stick me himself and he got me on the first try.
Monday July 11th,2005 I arrived at the hospital at 5:30am and by 6:30am I was ready and waiting to get going. Of course I didn’t get moving until 8:00am. I don’t remember rolling down the hallway to the OR at all. The next thing I remember it’s Wednesday and they are pulling chest tubes. I didn’t get the second tube removed until Saturday along with the urine catheter. The following Tuesday, just 8 days after surgery I was released. It was my shortest hospitalization following surgery and I would have been out sooner but some old arrhythmia issues had resurfaced. It took me several months to get my energy back but I finally got it and I felt better than I had in a long time.
It took me a long time to figure out what I want to do with my life but just recently I have come to the realization that I want to teach preschool. I am very close to that goal already and I look forward to being able to make a difference in a child’s life and in the lives of their families.
That 1 in 100 happens more than once... without the 100.
Most CHDs have NO known cause...
AND MOST of the time they are NOT Genetic...
BUT once there is one CHDer in the family,
the chances of another CHDer is higher...
usually higher to have either sibling CHDers
or a CHD Adult having a CHD child.
Here are Litter Brother, Big Sister CHD stories...
2 amazing children... one now in heave, the
other on earth who have inspired and
forever impacted their family.
First, here is beautiful and emotional
song I dedicate to siblings... the ones who
have one in heaven...
This song is a sister, sharing her love
for her heavenly brothers, who when I earth
were her angels in waiting:
Austin's Story: (Little Brother)
With the birth of our son Austin came a world wind of emotions. We knew even though we were putting an end to the complicated pregnancy, that his birth would bring so many more challenges. At 22 wks. pregnant my husband and I went in for a routine ultrasound and came out not knowing the road ahead may bring. After two more ultrasounds our worst fears were confirmed… our precious unborn son’s heart did not develop right. We met with Dr. Kanakaria who bless his heart kept telling us that we did not do anything to cause this, he promised us that when Austin was born he would make sure he got the best of care. It did not keep us from wondering what we did, and making us feel like our world was being taken from us. In utero he was diagnosis with Common Atrium, Single Ventricle, Pulmonary Stenosis, and possible Heterotaxy Syndrome, and asplenia, and until he was born they would not be able to draw any further conclusions. On July 3, 2005 Austin Skylar Gregory was welcomed to this world. As soon as he was born I got to hold my precious son in my arms, and within a matter of seconds he was whisked away from my arms and taken down to NICU. I did not want to let him go, but made sure my husband followed him and watched him closely. Not long after his birth he was vented, but seemed to remain stable. As the days went on we thought he was progressing well and soon would be on his way home. Then we got the call…and when we thought the ride was coming to an end, we QUICKLY realized it was just getting started. One minute we were told that our son would be coming home in a few days, and the next Dr. K decided that Austin was going to need to get the BT Shunt placed in after all. Three days later he was in surgery. Dr. Bailey said the surgery worked great and said that he should be home by that weekend, but that night he had a few setbacks. My husband, Suzy, and I watched as the doctors calming starting bagging our son. In a matter of days he turned for the best…the ride was looking good. Once again we prepared to bring our precious angel home. The day we were getting ready to bring him home, he starting having complications with his breathing and heart. Dr. K and Dr. Bailey decided to do an catherization... We were told that the procedure should only take an hour, well an hour turned into a few hours. All of a sudden we got the call to meet the doctor on the heart floor. We were told that Austin would need emergency open-heart surgery. The BT Shunt was clotted. The doctors gave him little chance for survival. They did not foresee him making it out alive. All we could do was cry and hold each other hoping for the best. My husband and I got to spend about an hour with our son before going into surgery. He lay there hooked up to machines, he looked so peaceful, but yet his heart was still broken. Would he ever be whole again?? Me and Mitch got to go down with him to the OR, when the time came to leave him there not only were we but the nurses eyes were filled with tears, we all feared the worst. The Surgery was a SUCCESS; it did not take long at all. Dr. Bailey and his team did a great job. Austin once again proved just how strong he was. He was a fighter And like papa called him he was a TIGER.
They had to leave his chest open, because of the swelling. They decided not to put any more pressure on his chest. He was in critical condition but he was doing well. We had spent the next day by bedside watching our angel, and within ten minutes of leaving his side he started to have a heart attack. Luckily Dr. Bailey was at his bedside and literally used his fingers to pump Austin’s heart. Austin’s body functions started to fail at time but the doctors always seemed to make everything work again. He then got NEC and his abdomen soon became swollen, after about a week he fought it off with the help of strong medication. He was looking good again. I finally got to hold him, but it was not for long he seemed to not be doing well off the ventilator, so they had to re-intubate him. Then his central line got infected and when they pulled it our blood clots released into his body. Austin did not let them get him down; he fought and kept fighting harder than ever. It was so hard to just sit there and watch our son go through all of this knowing there was nothing we could do to make things better for him. Why couldn’t it have been us? We would have done anything to take his place. A week later, Austin suffered from a neurological stroke. He was down for some time. Dr.’s feared the worst. What kind of damage happed to him during that down time?? They thought he may have lost his vision. After that he just laid there helpless. They were no longer able to take blood from the line, and he was getting bedsores. The NEC came back. Things were not looking good. We had to start deciding how far we were going to push our son. The doctors wanted to place a broviac in but the day they planned to do it, they soon realized his veins and arteries in his upper body were no longer any good. They were thinking about placing it in his upper thigh. They sent in someone to let us know what the changes would be. My husband asked her what the chances that this will work are and what are his chances of survival. She looked at us with tears in her eyes and said it would only give him a few more days of life, that they knew he would not live to see his first birthday. We were so overcome with emotions; all we could do was lay our heads by our sons and cry. After some more tests were taking they realized that his body had been full of at least 35 blood clots and inside the clots were sepial fungus. They said they could get rid of the fungus, but they would have to get rid of the clots first, and that could take months to do. Austin did not have months. He was swollen from head to stomach, and sometimes you could see blood at the edge of his eyes. He was not looking good, and you can see he was getting tired. He no longer held our fingers like he once did, and he just lay there lifeless, even though he had been off the drugs for a while. He would not wake up.
Then the news came that his head was swelling. Apparently he had a blood clot on the base of his brain blocking the blood from leaving his brain. They wanted to put drains in his head to take care of the blood problem. But they said there is a good chance that he would die in OR. They said a healthy child does not have a good chance of survival, so his were really not good. When we looked at our precious son we knew he was tired and it was time to just let him rest. I couldn’t put him through any more pain. My husband and I struggled on what was the best decision for him. After a lot of tears we decided to place him on comfort care, it was the hardest decision a parent would ever have to make, but we had to do what was best for him and not us. We left the vent on and continued his medication, but did not allow any more intervention. If he started to pass they were to call us. Four days later, on August 29, 2005 we received a phone call that it is time and for us to get there quick. We lived about 45minutes away so we called his godmother Suzy and asked her if she would go sit with him. We wanted someone that loved him as much as we did there with him if he passed away before we got there. When we got there we were a companied by his godfather Scott, godmother Suzy, and Janet a family friend. My husband and I went up to his room. We got him dressed in his coming home outfit, and as sad as it was he was going home just not with us. We talked to him and told him that we loved him so much, and we would really miss him. That he will always be in our heart and we would be okay. Then we had them take everything off of him. We did not want him to pass hooked up to wires and machines. My husband Mitch made sure they gave him plenty of drugs so he would not feel pain. And then we took turns rocking him. It was only the fourth time I held him and my husband’s 3rd. Mitch knew how important it was for me to be the one who held him as he passed. I was to first to hold him when he came into this world and I was going to hold him as left. It took him 15minutes and I fetl that he was in no pain. He gasped for a breath three times and on the third one he passed away. He looked so peaceful, like a little angel. My husband rocked him, and then I got my first and last dance with him. It felt like he was in heaven dancing with me. After Scott, Suzy, Janet, Joey (Mitch’s brother) and Mitch’s dad came in and held him too. When the time came to take him down Joey wanted to go with him, and it made my husband and I realize we could not let him go alone. So with a lot of persuading they let me sit in a wheel chair and carry him down. We took him into the morgue and gave him kisses and told him that someday we will all be together again. He service was beautiful; Mitch and I dressed him, did his hair, and arranged all of his tigers around his casket. It was our way of showing him to all those who never got to see him. His life was never easy but he was a strong fighter. We were not only proud, but also blessed to be his parents. Looking back on the experience it was a long roller coaster ride, but well worth it. We promised ourselves that as long he got one breath of life then we did him right, we did not let them talk us into aborting him when we were pregnant, because we knew he was special and deserved a chance. Austin was too precious to live on this earth. God had something else planned for him. He is now our angel. We knew that it was his time; we had to let him go to heaven so he could be hole again. We did not do it for ourselves. This was all about his quality of life. My husband and I may now live with a broken heart, but our son’s heart is whole again, and that’s what matters. We will never be the same people again, but we learned that family is what matter and nothing else. Austin will forever be remembered. He had such a huge impact on people’s lives. We thank you Austin forever thing you taught us, you are truly a miracle, and a beautiful angel. We know you are up there in heaven watching out for all the other heart babies. WE LOVE YOU!!!!
Makayla's Story: (Big Sister)
After what seemed to be a normal pregnancy I gave birth on April 8, 2002 to a beautiful seemingly healthy baby girl. It would only be after five years that we would fully understand the situations that led up to the day that changed our lives forever. It all began when Makayla was two weeks old and hospitalized for at the time we were told a simple viral infection. She was admitted for about three weeks of blood draws and spinal taps. Once again at three months old she started displaying signs that something was wrong and was admitted into the hospital. This time only staying for two weeks, we left with the same diagnoses of a viral infection. At 6months and 9 months she was readmitted for the same thing, each time we never got any answers other than they could not figure out what was causing her so many problems. This was sadly becoming the pattern of our lives and right after her first birthday we were back in the hospital demanding answering and feeling helpless that we could not fix whatever was wrong with our precious daughter. We watched time and time again these doctors poking her with needles. Throughout the first year she developed according but just seemed to have a week immune system and suddenly our hospitalizations stopped. All of the doctors chalked it up as her body getting stronger but I always feared there was something else going on. After that last hospital stay Makayla went on to develop into an intellectual little girl, with a love for learning and life.
Suddenly when she was three years old our words were turned upside down. We discovered that her little brother would be born with sever Multiple congenital Heart Defects. Makayla loved visiting her brother at the hospital and would sit and read him stories she memorized. After numerous procedures and open heart surgeries he passed away at fifty six days old. As heart breaking as this was we would later discover he was a blessing in disguise.
Then two years later everything started making sense. I can remember my daughters Kindergarten physical like it was just yesterday. It started like any other doctor visit, but quickly turned into a mother’s worst nightmare. Her doctor was listening to her heart and it seemed like it was forever when she turned to me and said “I didn’t know your daughter had a heart problem too.” Those words hit me like a ton of bricks and I froze, no words would come out of my mouth. I remember just wanting to grab my daughter and run far away from that place. When I looked at Makayla her eyes were filled with tears and she asked me, “Mommy am I going to die too.” You could see the fear in her eyes and the innocence in her heart. We sat quietly in the office while appointments were made to see a Cardiologist. From that point on everything seemed to happen so fast, it was like we were outsiders looking in. But for the first time in five years all of her past hospitalizations finally made sense, if the doctors would have taken the time to check her heart this could have all been fixed while she was a baby and not a little girl scared for her life. We spent the next few days preparing her for Cardiologist appointments and comforting her. The day came to meet the cardiologist and they gave us a diagnosis of a Large ASD. They were astonished that it was never found before then, because it was very obvious. They said that the right side of her heart was so enlarged it was working at the pace of a 35 year
s old smoking man’s heart. They weren’t even sure how she was functioning from day to day life and were surprised she hadn’t gone into cardiac heart failure yet. When we met with Dr. Bailey he said the whole was too large and lop sided too be fixed through a catherization and would need open heart surgery. Dr. Bailey had a way to him that made us all feel at peace, he was also our son Austin’s surgeon and we trusted him. When the day came for her surgery I remember Makayla looked at me and her dad with such strength in her eyes. She told us “Mommy and Daddy don’t worry God and Austin is with me, God will make sure I’m okay.” At that moment she seemed wise beyond her years and was wheeled away from us. The hours she spent in surgery seemed to be the longest hours of my life, pacing and wondering if she was okay. When we call the call from the OR that she was okay we rushed up to recovery in tim
e to see her coming down the hall. It was amazing how beautiful and full of color she looked. At that moment I realized that in the last five years she has never had so much color to her skin. She always looked pale, greyish and her eyes looked sunk in. God gave us or baby girl back! When she finally woke up her first words were “I told you I would be okay, now can I go home?” You could see the pain in her eyes but she hid it with a smile on her face. As soon as Dr. Bailey came in the room she asked him the same thing, and he said you have to walk first. So she said fine lets walk! A few hours after surgery she walked the halls slowly and crying in pain but she was determined to go home. Dr. Bailey told her she was a strong little girl and who was wise beyond her years. The next morning she was discharged from the hospital and recovered quickly. Makayla even got to start Kindergarten with all her friends.
Since her heart surgery she has had tubes placed in her ears, adenoidectomy, and tonsillectomy. Two years ago when she was seven they discovered that she has tricuspid valve regurgitation, mitral valve regurgitation and slightly enlarged right sideof her heart. Makayla has decided to let God be in control of her life and always tells people God is watching out for her. When the time comes to get those valves replaced she said God will get her through it. Since her surgery Makayla has decided she wants to go to school to be like Doctor Bailey. She wants to save the lives of babies and kids, just like he saved hers and tried to save her brothers. When people tell her she doesn’t look sick, she always tells them it’s because you can’t see my heart. At nine years old Makayla has had to learn her limits and pay attention to her heart. She refuses to let her CHD control her life but knows she has certain limits. She loves her zipper (surgery scar) because it reminds her of what she went through and that she is part of a special group of kids who were handpicked by God. Not once has Makayla asked “why me”, but always says “God has a plan for all his children.” My daughter is my hero; her faith has taught me so much in life.
This is Bayden. He has “pink” Tetrology of Fallot & 3 other CHDs. He was 2 when I met him. He is a spunky little thing! He is curious, adventurous, yet gives you a smile that melts your heart. Brittany you have a ladies’ man too hehe. ;) Bayden likes what he likes and has a kind spirit. He enjoyed sitting on my lap and taking pictures with me. He is full of life and full of energy! Amazing!
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