Connected By Heart ~ Day 4 ~ HOPE

Connected By Heart

HOPE.

Despite all the sadness and heartache in

the Congenital Heart Defect world...

their is HOPE...

LOTS of HOPE!!

-Over 50% of CHDers in the world today are Adults!!

-There is OVER 1 Million CHD Adults alive today

in the United States Alone!!

-About 80-85% of CHDers make it to Adulthood!!

So there is HOPE!!

I myself, as you know, am a adult single

ventricle CHDer... and proud of it!!

I made a Hope post last year around

this time... you can read it here:

http://laurensheart.blogspot.com/2011/02/hope-here-are-17-chd-adults-including.html

Us CHD Adults CAN LIVE pretty "Semi-Normal",

fulfilling, Happy lives!!

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 called Tetrology 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 as X-rays, ECHOs, EKGs, and CT scans; they didn't find anything in the X-rays, but when they did the ECHO and the EKG they discovered that I had VSD (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 at Children's Hospital in Los Angeles in 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 at UCLA (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 29^th,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 5^th, 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 13^th,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 11^th,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.

**NEVER loose HOPE!!

1 in 100 are born with a

Congenital Heart Defect!!

Be Aware!!**

~~ ~~

Connected By Heart ~ Day 5 ~ In the Family

Connected By Heart

Sometimes Congenital Heart Defects effect more

than one person in a family...

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 side of 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.

**CHD Awareness Week 2012...

Be Aware!**

~~ ~~

Connected By Heart ~ Day 6

Connected By Heart

Congenital Heart Defects effect 1 in 100...

To me that means 1 in 100 is a superhero miracle (I guess

since I'm a CHDer, I'm included in that)

Superheroes come in all shapes and sizes...

It sure is not easy being a CHDer... but somehow our

superhero powers always shine through.

Christopher's Story:

I am not sure where to start, but I guess letting you know how I learned about CHD. It was when my youngest son was born and I was told , quote, “your son has a lousy heart.” Those words were followed by, “there is nothing we can do, take him home and enjoy him.” Okay, I am thinking, “it’s 2008, what do you MEAN, you can’t fix his heart!?” People in general perceive CHD’s to be something like a minor hole in the heart, something that can be grown into, or “fixed”. The reality is that these children, SOME of them have the option of surgery, but not without lots of risk. Christopher is one of the ones that surgery isn’t an option for. His condition of dialated left ventricular non compacted cardiomyopathy means that that when a fetus is in utero, their heart is sponge-like ?(non-compacted)?. When they are ready to be born the heart will compact and become more solidified like a muscle. CJ’s heart did not do that - resulting in the cardiomyopathy (weakness of the heart). It affects his right and left ventricles where it is very hard for his heart to pump and function correctly. Nothing is missing, out of place, or backwards. It’s the whole heart, all big, stretched out, and stiff.

We took him home at 45 days of age and he was admitted into hospice the next day. The doctors told us that his prognosis was six months or less. We had to learn to accept that each day may be his last. It is a very hard thing looking into your beautiful child’s huge eyes and knowing he is just on loan for a short while.

God is the only reason I made it through that period of time, and I never let go of my faith that God would make my baby whole and it was a win win situation for him no matter what. The footprints prayer, well that was me, God literally carried me through. I remember people saying "they don’t know how I could sleep at night". Well, in the beginning it wasn’t easy and the pulse ox was a huge comfort as I could listen to it beep and know his heart was still beating. But somewhere along the way, I grew more confident, and eventually the pulse ox got dusty and I felt peace in knowing that Christopher was going to be okay.

Some people called it denial, some people called it an amazing act of faith - I tend to agree with the latter.

I trusted God and with that trust came the biggest peace that is very hard to describe. We celebrated Christopher’s birthday weekly and monthly, cake and all. Eventually, his expiration date came and went, he still remained a hospice patient, and we were still taking it one day at a time. His first birthday arrived and I cannot express to you the joy I felt that whole MONTH. The day we were promised NEVER to see was here!!! We had a huge celebration, and continued to give all honor and praise to the Lord. Christopher continued to get older and when he was 15 months old his hospice nurse decided it was time to take a look at his heart (we weren’t allowed any more ECHO's) with Christopher being a hospice patient and they “didn’t want to keep getting our hopes up”. The doctor told us that his heart had slightly improved but that he was still hospice status. Two days later we received a call from him that our visit left him feeling like it wasn’t finished and he took annother look at his ECHO. He also had all of his colleagues review it and Christopher’s heart had improved so much that in his good conscience, he could not recertify him for hospice! Okay after trying to put into words how I felt on his birthday, this is even more difficult to describe. Our language does not have a strong enough word. I can tell you that God does reward trust and faith and Christopher is a living breathing example.

In February 2010, it was discovered that Barth Syndrome is the cause of Christopher's cardiomyopathy. Barth syndrome is a rare, sex-linked genetic disorder of lipid metabolism that affects males. Typically, boys with Barth syndrome present with hypotonia (low muscle tone) and dilated cardiomyopathy (labored breathing, poor appetite, and/or slow weight gain) at or within the first few months after birth. Other important features of Barth syndrome include bacterial infections because of neutropenia (a reduction in the number of white blood cells called neutrophils), muscle weakness, fatigue, and short stature. Although most children with Barth syndrome manifest all of these characteristics, some have only one or two of these abnormalities and, as a result, often are given incorrect diagnoses. It is very rare, less than 200 known cases worldwide. So much that if people would hold hands from one end of the world, all of the way around, only one of those people would be a boy with Barth syndrome.There is no specific treatment for Barth syndrome, but each of the individual problems can be successfully controlled.

He is now 3 years and 8 months old, his 4th birthday is rapidly approaching and I am basking in every minute with him. I still know better than to take for granted my time with him as we don’t know when god will call us home. It is a true miracle that my Christopher is alive today.

God is still in the miracle business. Also, doctors have to tell you what they have learned in the text books, but that doesn’t mean God or the child in question is reading that same book. I don’t know God’s plan, but I know that the least I can do is to continue to honor and praise Him, while also helping to spread CHD awareness.

You can read more about Barth syndrome at: http://www.barthsyndromefoundation.org/

And you can follow updates on Christopher here: http://www.caringbridge.org/visit/cj08/mystory

Natalie's Story:

Carrying Natalie, before being born, was awesome. Even the nausea, compared to her big brother, was mild. She went easy on me while I was pregnant with her. Everything was uneventful and normal. During the course of my pregnancy, I decided to switch my ob/gyn around 20 weeks along which probably ended up being the beginning of a big mistake. Seriously soon-to-be mamas: don't switch if you don't have to. Lesson #1. The only reason I switched was to deliver at a hospital that was supposed to be "top notch" (it ended up being just as good as the hospital where my son was born). As opposed to my old OB, I had no idea but my new ob/gyn was totally against using ultrasounds hardly at all since my firstborn was born healthy and full term. I had to pretty much beg for an ultrasound since I hadn't had one yet, so at 26 weeks I finally found out that Natalie was a "she". During the scan, the tech noticed that Natalie was very wiggly and the shots of her heart were not clear at all. She told me to tell my doctor, so she can send me for another scan another day. Totally cool. When I followed up at my checkup with the ob/gyn I asked her "so I hear the scans weren't clear enough at the ultrasound" and she states that everything was perfectly fine.

Now I know to never even take a doctor's word as the final word when I feel uncomfortable. But at the time, I just let it slide, even though I felt frustrated, but I just knew that everything was probably..well..fine with Natalie.

The pregnancy went to full term and I had to evict Natalie by scheduled induction on April 21st, 2007- the same day as her daddy's birthday.

The labor was fast and furious and she was born 3 1/2 -4 hours after labor was induced. She was also born with a clean bill of health and nice and pink. Apgar scores both 9, we were so ecstatic. Every thought about our unclear sonogram photos went totally out the window. The nurses and doctors all heard Natalie's murmur pretty soon after the birth, but we were told not to really worry because it's so common to be born with a murmur that closes up quickly. Right before our 24 hour discharge from the hospital, the nurse who checked Natalie out said the murmur was gone and we were given the discharge papers. Home here we come!

We got home and right that evening, my mom in law noticed how purple Natalie's feet were. I was so deliriously tired that I shrugged it off as nothing serious, that "well, she has really fair skin like her daddy". We never noticed much of the "purple spells" again so our overly exhausted brains didn't think much of it. We followed up with our regular pediatrician for the usual few day old checkup and sure enough, our doctor heard the heart murmur loud and clear. Our doctor couldn't believe no one caught it before we left for home a few days ago. The murmur never went away. Getting a bit concerned, our doctor gives us a referral to go and see a heart specialist at Johns Hopkins Children's Center. Within about 2 weeks later, we were in the pediatric cardiologist's office. Natalie's oxygen saturation was 90%, but her weight and color were normal. At the time, I didn't know much of the pulse ox numbers, but now I know why they rushed to get her into the room to have her heart scanned. They knew something wasn't right- 90% is not normal.

While scanning her heart during the echocardiogram, the doctor walks in about 20 minutes into the test and heavily stares at the screen for a moment, then sits down next to the tech and says "hmm..Natalie you're even trickier than I thought". He went from kind of concerned to really concerned. I'm sure my heart rate went up, but I did what I could to keep Natalie comfortable. She laid there like a champ. The echo had to be at least an hour.

A little bit after getting settled into the exam room, the cardiologist walks in, really stern face, sits down with me and tells me how sick Natalie is. He explains all of these medical terms..but my ears aren't letting much of it in... neither were my eyes because the tears kept me from seeing his diagrams.. finally the tears fell so I could see the diagram he took some time to draw: something to show me exactly how Natalie's heart looked. He explained how she wasn't born with a right ventricle, that it wasn't functioning at all. That she has a VSD and an ASD but those 2 defects typically came with the defect of Tricuspid Atresia and that her ASD (Atrial Septal Defect) was actually helping to keep her alive. It was so much to take in. I was so scared to hear more, but I knew I had to hear him talk, but I wanted him to stop talking. He let me cry and even left the room for a little bit to let me cry it out. Poor James and my mom in law were sitting in the room, too. I was holding Natalie and giving her a bottle and just was in such denial that she was sick. I kept repeating that she didn't look sick- even her fingers and feet looked nice and pink.

From the time that Natalie was diagnosed to the time that she had her 1st of a few surgeries, the doctors at Hopkins and our pediatrician all kept a really (really) close eye on Natalie. We went in for daily weigh-ins a few days a week. We spent almost everyday at a doctor's office. My husband and I studied the anatomy of the heart and I tried my best to figure out exactly how a Tricuspid Atresia defect functioned. As a new "heart mom" I wanted to be the expert at everything- all the way from diagrams down to exactly what to expect when she's an adult. I was terrified of having more horrible surprises. I guess that was part of my grieving process- grieving the loss of a perfectly healthy baby girl.

Even with Natalie's cyanotic spells (now we knew why she turned so purple the day we brought her home and there was even a term for it!), Natalie managed to still gain enough weight to keep everyone happy. She was a little skinny and slept a lot, but she was getting closer and closer to the bi-directional Glenn operation, and getting more past the need for a BT Shunt. The focus was keeping Natalie stable and if she could skip the typical first surgery, we were told her outcome was even better. Her oxygen numbers were always in the high 80s or low 90s and with each point she went down, her age went higher. A few months before her surgery we "beefed" Natalie up with concentrated formula and she went from slim to super chunky. They wanted a chunky baby and they got one! With heart babies, the extra weight is actually great for them, during the surgery and for recovery. She had her very first heart catheterization, to help prepare the Hopkins team, about a week before Natalie's scheduled heart surgery. Right after they finished, the cath doctor tells us "well..we can't wait longer than a week for this surgery, she needs it no later, her heart is showing signs of declining. Please make sure the date does not change." My husband's jaw dropped. I remember how gray Natalie's skin was those few weeks before surgery. It was a good 50% of the time where she looked really sick. Her pulse ox dropped into the lower 80s. It was time.

On Monday, October 1st, 2007 Natalie had her very first open heart surgery: the Glenn Shunt. This surgery helps to prepare her blood flow to skip past the malformed right ventricle. The goal is to eventually have enough blood flow to the lungs without having to use that side, but use the left ventricle 100%.

It was a textbook case to the Hopkins medical team. But it was a miracle to us. I remember the advanced students (they called them "fellows") who visited the PICU would visit each patient 2 times a day to check their progress and document everything. They would always visit Natalie last because they used her as the example of a great outcome. They would always smile at me and there was never any shortage of compassion. Here, my 5 month old daughter lay there with tubes and wires coming from every direction, but she was kicking ass and they reminded me of that. I kept holding onto that. And with each day, more and more wires and tubes came out. Freedom!

By Friday, October 5th, 2007 Natalie left for home! Her surgery went perfect and her body responded perfectly to the surgery. She was sore, but the incision (scaring the crap out of me, I can't lie) was the only most difficult part of the physical care. I was so scared to do something wrong. And hearing Natalie cry from the pain... no mom or dad wants to see their baby in real, uncomfortable pain like that. But within a week of being home, Natalie was showing tons of signs that she was handling it more easily and she was feeling more comfortable.

From the time we brought her home until 2009, we just enjoyed her. She was able to do physical therapy and finally started walking around 22 months. Her energy, everyone could tell, was pretty good! At one point during Natalie's recovery, her cardiologist said "Natalie's body was made for this" (meaning, her heart defect).

In April of 2009 Natalie turned 2, we moved to Colorado from Maryland, but Hopkins gave us the all clear that she should be able to handle higher altitude. We were told that she probably wouldn't need her 2nd open heart surgery- The Fontan completion, until around the age of 4 or 5. We had more time to just enjoy Natalie.

The move went well, we quickly found a new pediatrician to help us keep an eye on Natalie's health, but during the summertime we noticed that Natalie wanted to rest more and her purple spells were more furious and happening more frequently. She still played and was active, but you could tell there was a drop. She would want to sit and lay around more often than play. We were finally able to get squeezed in to visit our new cardiac doctor at The Children's Hospital of Denver in mid-September for a sedated echocardiogram. That's when they threw a huge curve ball at us- the decided that Natalie was ready for the completion of her heart surgery and they wanted to operate ASAP. We were stunned. We thought we had a few more years!

We had a heart catheterization scheduled for October 8th, 2009. This was a way to prepare the heart team at Children's: to really get a closer look at her heart and past surgery.

We had another curve ball- the heart team found 3 collateral veins that had to be closed off right away. These veins grew at some point over the year or so to overcompensate for the insufficient blood flow. But instead of helping Natalie they decreased her blood flow, which is why she was getting so tired all of the time. After a night stay in the hospital, Natalie recovered well enough to go home and rest. About a week later, Natalie's energy was THROUGH THE ROOF. She was like a totally different kid. She was jumping and running and being a crazy 2 year old. Her collateral veins were closed off with platinum so there's always a running joke now how expensive Natalie's insides are. The only thing missing now are diamonds, which if Natalie could have demanded diamonds she would have.

On the early morning hours of Tuesday, January 12th, 2010, we brought Natalie back to Children's for her Fontan operation. We were so very lucky to enjoy her through Halloween, Thanksgiving, Hanukkah, New Years, but now it was time to get back down to business.

Her body was ready for this operation even if us parents were not. Other than some extra "oozing" as the surgical team calls it, Natalie's transfer from off of the heart/lung bypass machine was a success. The operation took a whole lot longer than her first surgery, but this was it. This surgery was to "finish off" what her heart and lungs needed.

We had some little scares during the days in the CICU but nothing that hindered her ability to recover. At one point her kidneys were a bit "freaked out" with the amount of fluid and blood pumping in her body right after surgery, but her body worked it out. There was also a scare with her blood pressure dipping way low at times, particularly for the 2nd night, but just like her kidneys, her body worked that out, too.

By Monday night, January 18th we were all HOME. She did need continuous oxygen for a while, but we were prepared.

Natalie recovered beautifully. It was, once again, a text book case. We were all so thrilled. Within about a week of coming home, it was so hard to get Natalie to take it easy. Her energy level was pretty great and it became tricky to keep her from hitting her incision. But her incision healed beautifully. There were even moments we were given the green light to let her have a break from the continuous O2. As you can imagine, that was like heaven to Natalie.

We used the oxygen therapy until about April and we didn't look back (except for when she had a nasty case of RSV in 2011 when she needed it again for a like a week).

Since her surgery, Natalie has evolved into such a spunky, energetic, wild and crazy 4 (almost 5) year old. She asks about her scars once in a while and tells us that her tummy and chest scars are "cool". To date, Natalie has about 9 visible scars from her surgeries- her "zipper", chest tubes scars, wrist scars, and neck scars from various lines. But just like her scars, the memories that Natalie has about her surgery seem to slowly fade away. She has attended preschool, a dance class (and another one coming this summer), loves horses, has had a Make a Wish trip to Disney World, and visited a real beach for the first time recently. She loves the big waves of the ocean. She's the kid, out of the 2 we have, that we'll have to keep a close eye on, but not just because of a heart condition, but because Natalie is a true thrill seeker.

Watch out world! Here comes your present day Shirley Temple! : )

Zander's Story:

Zander was born 31st July 2010 14 days over due. Normal pregnancy 4 scans and no signs of any problems. Zander was born naturally, weighing 10lb 3 3/4oz. But when Zander was just 9 hours old we were told Zander had a loud heart murmur and we was asked to stay overnight and a midwife check on zander hourly on his temperature and saturations and breathing I had at that point no idea what saturation moniter was.

That was a long and very stress full night the unknown was scary. The next morning we was seen at 9am, Zander went for a check with a dr who confirmed Zanders murmur was still there and loud and wasn't going to go away on its own.

He said because Zander was feeding well and sats were good we were allowed home but if Z had any blue/grey spells to contact hospital asap he explain what a blue spell was to us and said we would receive an appointment for a detailed heart scan within the next two weeks to see if the murmur had gone.

We put things to back of our mind a little as Z was eating well and doing well.

We got an appointment for August 19th 2010 I took Zander and his heart healthy sister, Avril to rotherham general hospital where he was born for his scan I was dreading it. Zander was so good laid well. I remember well Z let off the loudest trump and the ladies commented on it.

The scan seemed to take forever then we had to go to out patients and wait to be seen by a consultant. This took forever. Then I was called into a consultants’ room, I could tell by his face it wasn’t good news.

He drew me a picture of a heart & went on to say several things about Zanders and his

problems. Then said he think he has something called TOF, tetralogy of fallots. But we had to be referred to leeds for a more in depth check with the specialists.

While he tried to contact Leeds, I rang Dan (at the time

my partner) & explained what I could to him from what

has sunk in from the consultant. Dan was trying to

arrange a lift to the hospital to be with us. The consultant

managed to contact Leeds and said we would be called

with an appointment. They rang the next day, at 12pm

and I had to get us a taxi to Leeds for 2pm as all the

family was working.

The scan seemed even longer than the previous day.

Zander's consultant Dr. John Gibbs an amazing Dr.,

confirmed Zander had ToF with a large VSD and

Pulmonary Branch Stenosis. What the heck was this I

thought?!!? He went on tosay that if Zander behaved and

stay well he would need open heart surgery before his 1st

birthday. What? Why would my tiny baby need open

heart surgery?! Please tell me why?! Some bits went over

my head, feeling like my world was crumbling.

We was aloud home the same day, he gave us a booklet on TOF that I have read over and over since that day.

For the first 5 months Zander did really well he thrived and apart from regular heart checks, appointments a sedated echo he was doing well. He was our page boy in Oct 2010 he looked fabulous. But he started to get blue tints to his hands lips and feet. By ec time he was completely off his bottles and food. and from Dec-April that was a downward spiral with no one listening to me. During this time Zander started having TET Spells. the first was in Feb 2011. it was awful one minute he was eating the next he was screaming then white and floppy, while I was on the phone to the ambulance he came round. His sats were low and we were admitted to RGH over night the next day Zander was put on beta blockers propananol (spelt wrong sorry), 3 times a day to try and keep spells at bay.

Feb 14th Zander had a heart cath at leeds done by dr john gibbs as they needed more details for Zanders surgeon. He had more spells another bad one in April 2011. Another admission to hospital his sats were low 70s late 60s.

At this time we were finally referred to a dietician.

We came home the same night. Zander from December he had become more blue and more and more breathless. In April we met Zanders surgeon Mr Kevin Watterson (God).

He explained Zanders heart was a very tricky condition and would be a long and very risky surgery, he said it would be sometime in the next six month his surgery. Oh my 6 months that seemed a lifetime away.

But at Zanders regular cardio app in May Dr brown Zanders cardiologist decided it was time to push Zanders surgery forward hi sats were dropping he was so tired. She said she talk to his surgeon.

Dr brown rang a week later saying Zander had pre op appointment for the following week. Oh wow so soon. We went May 31st nd Zander had lots of tests and we met his anithnatists, bloods done ecg etc.

We was told surgery would be within two weeks dr brown rang me that Thursday to tell me Zander should have had surgery that day but had to be cancelled. We was rung weds 8th June dinner time by Zanders surgeons secretary Zander was due for Surgery Friday 10th we had to go for admission by 2pm the next day. Was awful mixed feelings at home, what ifs etc. Also Avril not knowing what was happening she was only just 3.

Was hard leaving her with family. We got there for 2pm, was given a room, and we waited for Z's endless tests for checking he was well enough for the next day.

We went in playroom, tried to keep as normal as possible Mr. Watterson came with consent forms and went over surgery plans again as said it could be 8 hours even longer.

The rest of the night me & Daniel played hangman tried to keep upbeat. I was awake by 6.30 just watching Zander sleep. Was so hard knowing what was happening that day. It was dark in the room, I was so scared so damn scared. I just prayed my boy would be brought back to me. They brought a gown for Zander about 8am, we took the long (well not so long but very scary walk to the theatre and they gave Zander his mask to send him to sleep was awful to watch saying goodbye was hardest hated leaving that room, was harder watching him go to sleep this time than when he had his cath done :'(..)

We went back to ward 10 we had been offered parents accommodation in the old nurses building so we moved our stuff over there. We walked into leeds centre in a daze. We went to the pub longest pint ever had. We sat with our phones close by at all times. We decided to go to the cinema knowing that it would be several more hours until Z was out of surgery and we had our phones on our knee the whole time. We went to see Hangover 2 but I have to say I spent more time looking at my phone than the film, we went back to parents accom and waited and waited, when it was around 8 hours we went back to ward 10 and waited in the parents room, it then got to 9 hours than 10 hours than 11 hours we was stressing thinking the worst.

It was almost 12 hours I went to the nurses’ station they said Zander was just being taken to CICU by the time we got took to ICU it was gone 10pm and Mr Watterson wanted to see us first he said surgery had been more complicated than expected and Zander was a very tough case. He had also found Z had several more layers of narrowing in his branched arteries and it was very severe. He patched up what he could get too and closed the hole. But he still had narrowing between heart & lungs and hoped they grew in time. He went on to say it was up to Zander next and the next 12 hours were critical and he still might not make the night.

We finally got to see Zander almost 15 hours later he looked so puffy but So PINK! He looked amazing in color. But he struggled lots and those first 4 days were very up/down touch and go. He had bad temperature problems, he was on dialysis, his heart rate was very low, he went into complete heart block, he had shadows on his lungs, enlarged liver. By day 7 he had still not got his own heart rate/rhythm back. Mr Watterson had decided Zander was going to have a permanent pacermaker implanted. A Pacemaker?!! He was 10 months old!!!

Mr. Watterson explained his surgery would last around 2 hours and they was slight risk of infection with the pm being a foreign body :(.

I broke down near Zanders bed Adrien the nurse was amazing i had to know would his heart be stopped again and so much more.

I rang Daniel that morning and explained everything he was already coming that day so was relieved.

Daniel arrived early pm, we saw Zander for an hour. We had a call about 5pm Zander was going for surgery. We decided to go to pub and a wander, we was called at 7.30pm to let us know Zander was on the ward and surgery went well. They slowly started weaning him of the vent and other medicines. Though he started showing signs of infection and was blue tinted for first time since surgery :(. He was put on a course of antibiotics. Saturday 18th we saw him with his eyes open properly. It was beautiful, he moved beds and then by Monday he moved into a side room.

Tuesday he was moved up into HDU ward 10, he ate his 1st food in 11 days by mouth too, and Avril was with me that day and me Avril & Zander had our first cuddles since surgery was amazing!!! Love that amazing lil dude and his big brave sister!!

Zander moved into his own room the next day he was getting stronger and stronger. He was allowed home Sunday 26th June 16 days post surgery. He came home with 2 lots of diuretics and some other medications.

He went from strength to strength crawling shortly after his 1st Birthday, his 1st birthday was very emotional. And lots of people came. Thank you all.

August he had a cardio app and was taken off his diuretics.

Oct 2011 we had his 2nd pacemaker app with Dr. Blackburn. Dr. Blackburn found that since August Zanders inlet Valve had broken causing enlargement on the right side of his heart :'( meaning possible surgery sooner for valve replacement or repair. Oh Geeez what else did my poor lil mr has to go through?! He was put back on his Diuretics.

Dec we had his 3rd Pm appointment no change :'( scary to hear. Zander does get slightly breathless still and very very sweaty we are back in leeds Feb 14th I pray for improvement.

Also have had endless other appointments and checkups scans/etc. Too many to mention all.

I just want to say above all this Zander is a very happy maybe tiny but amazing 17 month old who amazes me daily. I Hate to think of the future but enjoy life daily.

Thank you for reading A Shortened version of Zanders life, so far his amazing journey.

Cassie Zanders Mummy! x x x

**Remember: 1 in 100 are born with a CHD

BE AWARE. EDUCATE. SPREAD AWARENESS!!**

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