Feb. 7- CHD Awareness- Lauren's Story

I was born in August of 1987, supposedly a healthy baby girl. I was taken home and thrived. A few weeks after coming home I started to display some things that worried my parents. I was throwing up everything I ateand was developing a rash all over my body. My mom took me to my pediatrician and they told her “I was fine”. My mom knew I wasn’t. Not only her second child, but my mom was a dietitian and had some medical knowledge; she knew something was wrong. My mom took me to the pediatrician’s once a week for 6 weeks, yet the doctors still insisted I was fine, just a mucousy baby. One morning when I was 11 weeks old my mom found that I was breathing very heavy and turning bluish-gray around my mouth. She took me to my pediatrician again and demanded a local hospital to admit me (back then my parents were on health insurance that you needed a request for admittance for tests by the primary doctor). My pediatrician and a nurse checked me over, again… this time they heard a murmur so finally they agreed I needed testing done. I was rushed to the nearest ER and an on call intern who looked at me first just had learned all about Congenital Heart Defects, so he knew it was most likely my heart. I was taken to get a chest x-rays and when he came back said that my heart was very enlarged and most of the right side of my heart was missing. Children’s hospital was called and an ambulance got ready to take me. Once my mom was told what was going on; she called my dad who came from work right away as well as my grandparents. My mom was not allowed to ride in the ambulance due to not enough room. They told my parents I was in severe heart failure and they didn’t know if I’d make it to the hospital. My parents had been thrown into every parent’s WORST nightmare!!

I made it to the hospital and was stabilized. My cardiologist (well the one I had the first 22 years of my life), told my parents I have a Congenital Heart Defect called Tricuspid Atresia, Hypoplastic Right Ventricle (which simply means I only had one working ventricle (my left) or half a working heart) and that I had to have an emergency heart cauterization to re-rip a hole in my heart so blood could flow better. My cardiologist was kind and caring to my parents. I was sent home a few days later on a few medications and a special formula which consisted of concentrated Isomil with polycoseadded (basically formula with tons of calories/fat added)so I could gain weight as I needed to be at least ten pounds for my first open heart surgery which I would have between 3-6 months of age! My mom tells me it was a grueling task to get me to eat and keep down all my formula. She told me it took about an hour for one ounce and she needed to feed me every hour with a syringe. I still very sick and due to a late diagnosis my Pulmonary Artery was about 3-4 times the size it should be, but could not be fixed till I was stronger. That Pulmonary Artery could have popped at any time before my first open heart surgery and would have killed me. Looking at pictures you would never know how sick I was. If that wasn’t a big enough task to take care of me, my parents had my older brother, Ryan, to look after who at the time was only 4 1/2years old and carried a lot of germs that could make me very sick. Of course Ryan adored me so it was hard to keep him away from me. It wasn't easy for them, but they had family to help out and support them. My parents kept strong for me and held onto faith that I would be ok. My parents didn't want to accept that something might happen to me.

In early February of 1988 I had my first open heart surgery called the Pulmonary Artery banding. It was to help the blood flow in my heart and lungs until I was old enough to have a procedure called the Fontan. The surgery went well. Though it was successful in its purpose it didn’t make it any easier on my parents and family. I was still a sick little baby, but my parents never lost hope that I would be ok! As for complications, I had one code blue called during my 10 day recovery because I pulled out my breathing tube, but after that all was well!Soon after returning home I got dangerously sick with RSV! I was taken back to Children's Hospital andadmitted. I spent a few weeks recovering from RSV on lots of medication. My dad tells me my crib has a bubble thingy over it to help me breathe and for breathing treatments (I don’t know the proper name for it). After returning home from recovering, everything went well and my parents as well as my older brother adjusted. I was born with other medical issues, one is an eye muscle disease called Estropia (“Crossed Eyes”), I did patch therapy as a baby and then had my first eye muscle surgery at 18 months old; which was during the time in between my two open heart surgeries. Despite everything, I was a happy baby and smiled a lot!

On November 21, 1989, my parents handed me over to the doctors for my second and riskiest open heart surgery, the Modified Fontan Palliation. It had only been a month before during a heart cauterization that I developed a blood clot in my right leg and scared my parents, now it was one of the biggest days for them and for me. The Fontan was a surgery still a fairly new operation (about 15yrs old). This surgery was either going save my life, take my life, or have my parents looking for other options and my parents knew that all too well. About a 50-60% of me surviving with my specific case waswhat the doctors bluntly told my parents, but my parents hung onto all positives. My parents had a lot of faith in the doctors and God that I would come out ok. I cameout of surgery ok, I was alive! As far as complications that I had from this surgery, I had a chest tube issue (they had to put it back in while my parents held me down as they didn’t have enough nurses around at the time), a SVT/very fast heart rate scare where I coded, apacemaker scare (never got one though, I'm very grateful for that) and I was put on a special diet (medium chain triglyceride diet). All things considered, I did pretty well with recovery. I was discharged from the hospital exactly one month after my surgery which was four days before Christmas 1989. My family had every reason to celebrate. I did too! I got out my mom’s lotion the day I got home and went to town putting it all over myself. I was happy and alive. What more could my parents and family want?

After that second surgery I was as healthy you can be having severe heart condition or “half a heart”. I had years in between the second surgery and any minor concerns. I went to my cardiologist once a year and was on a few medications, other than that I was doing great. I had another eye muscle surgery when I was 8, I got four stitches in the my bottom lip from getting hit be a swing when I was 8.

I got a little brother, named Aaron, when I was 11 years old and that was wonderful; I'd hold him as much as I could. Aaron and I are very close. When I was six my mom got me into acting classes; she signed me up to the family theater in our city. I was in plays till I was twelve when the family theatre group closed. I enjoyed being on stage and it made me feel on top of the world. It is something I will always remember; even my mom was in the plays with me! For my parents and family to see me up on stage happy and alive was so extremely exciting for them. I bowled, started at age 5, which I loved and years later I ended up being on my high school girlsvarsity bowling team. I enjoyed playing with my little brother, Aaron, as well as watching my older brother, Ryan’s, basketball and baseball games. Both my brothers have always been loving and supportive to me.

I was a pretty “normal” child and teenager in most aspects (I did have some limitations though) and for the most part I was a very happy child that loved to talk, to people I knew anyways (I was shy around people I didn't know). Socially I had some trouble and go teased a lot (I was shy, had glasses, couldn’t keep up with other kids during gym/recess and was not allowed to play contact sports), but I did end up making a friend or two which is all I really needed to be happy. Even in tough times I tried to have a positive outlook and have a smile on my face. I loved to write and still do, I have always enjoyed talking, and many of the simple things in life. Unless you knew I had a severe heart condition, than you probably could not tell other than the scars on my chest. My parents were open and honest about my heart my whole life, even when I was young. They always explained things to me in age appropriate ways and only what I needed to know. My mom would always tell me to listen to my body, if I was tired in an activity then stop or if I didn’t feel right then tell someone right away. I became very good at this. Though by age 10, I knew the name of my heart condition, that I’ve had open heart surgeries, what medications I take, etc, but I just did not know the all the seriousness of it. My parents always supported and encouraged me. They always would let me know how special I was and God had big plans for me. I was very Myparents never let me give up on things and gave me a pretty “normal” childhood. I’m thankful for that!

At age 14 I was diagnosed with yet another medical issue, congenital scoliosis, meaning I was born with an extra vertebrae in my back and hips not aligned that caused mild to moderate scoliosis of my back. My back is monitored, but because of my heart, not much can be done. I can get bad back pain, but it something I live with and I try not to have it get in the way of living my life.

It wasn’t till the summer I turned 16 where my health changed for me; it was a turning point so to speak. I broke out into hives all over my body for no reason early one morning and I was so scared. I remember going from doctor to doctor and even my cardiologist, getting my blood taken, getting my heart looked at, everything to find out what was wrong. I was in so much pain because the hives were on my joints too and it was hard to move. Finally, after three months of steroids, being off my heart medications, and being watched 24/7. The hives went away and to this day no one has a clue what happened. From then I realized that anything can happen and I was so grateful and blessed for what I have. I held onto my faith in God, but there were times I questioned everything (and I still do sometimes), but I try to find peace. Since then life has not been easy for me, but it certainly can be worse and I don’t take a thing for granted.

I was diagnosed with exercise and stress induced SuperaVentricular Tachycardia (SVT’s aka very fast heart rate), when I was 18 and I’m on a low dose of a beta-blocker for that (which calms the vessels in my heart so it doesn’t race). When I first got the symptoms of the SVT’s it was scary for me. I had night sweats, bad chest pain, hard to breath, and harder to do daily activates. I was so scared that I didn’t even tell my parents right away, I know now that I should have and I should ALWAYS tell someone if something isn’t right, but it was hard for me to accept that something was wrong. Since the beta-blockers I have been SO much better, but I still struggle with on and off chest pain. It can get frustrating, but I deal with it the best way I can. Since then, I’ve also been diagnosed with muscle spasms (a year ago), mostly on the left side of my body that is usually stress or anxiety induced. I had my third eye surgery in July of 2008 and all went well. I’ve had one trip to the ER of Children’s in July of 2009 due to bad food poisoning. Since 2010, I've been having issues with weird heart beats and some minor heart rate issues, I wore a 30 day heart monitor in Sept. 2011 and it didn't find anything too concerning, just some non harmful palpitations.

Every day I have little reminders that I have a CHD; from my scars to my medications to my on and off pain to getting tired easily. They remind me that each day I’m ever so blessed and grateful to be alive. These reminders also keep fear with me, fear of the unknown and worry, things that are so hard to push completely out of my mind. This CHD has impacted my personality in many ways. My CHD has helped in my very emotional personality, my stubbornness, my bluntness about things, my kindness, and my care for others. It has taught me to be more understanding of people around me, has taught me not to take life for granted, to love the people you care about with all you heart, and to enjoy the simple things in life. It has given me a motivation to help others and to always have faith. I’m thankful for my life; I’ve been very blessed in so many ways. I have two parents who have done SO much for me over the years to bring me to this point in my life, the fought so hard to get me here healthy and happy. For that I will always be internally grateful to my parents, I love them VERY much!! I also have a wonderful family including two grandparents, two brothers, and a niece who I love dearly!! I also have an amazing husband, named Christopher, whom I love so much!! Chris is my rock and best friend. I also achieved my goal of graduating college! I graduated college with a BA in Psychology in 2011. I have big plans for my future including publishing my own book. Though I have a tendency to think negatively sometimes, I’ve been trying my hardest to think more positively!

I will keep spreading CHD Awareness and telling my story!! I have LOTS of Hope that ONE DAY CHDs will be more publicized and researched so that more children will be saved!! My CHD will never go away, but I will take what I can from it and keep living my life to the fullest with lots of smiles, laughs, love, and special memories. I try not to let me CHD define me because I’m so much more than a CHD. I LOVE my life and I consider my mended heart a gift!!

Facebook Page: Lauren's Heart: Living a Full Life with "Half a Heart"

Feb. 6- CHD Awareness-Colt's Story

My husband and I were thrilled to find out we were expecting after trying for 2 years. We were over the moon when we found out we were having a son when I was about 22 weeks along, we had a daughter, and a son would make our family complete! Every time I had a check up my doctor told me the same thing, he is perfectly healthy and he had a good, strong heartbeat. I was so excited, getting his nursery ready and having his baby shower were leading up to what I thought would be a normal birth. When I went in to be induced on May 26, I would soon find out just how wrong I was. Jakob Colt Frisbee was born at 2:39pm after 8 hours of intense labor. I knew something was wrong as soon as he came into the world, he was not crying and his hands, feet and nose were bluish looking. The silence of the nurses and the doctor were also a dead giveaway. The cleaned him up and he began to cry, they immediatly hooked him up to a pulse-ox meter so they could watch his stats, which they told me could be low because he might have gotten some fluid in his lungs while he was being born, they let me and my husband hold him and feed him and everything seemed ok until they moved me into a regular room, but Colt did not go with me he was took to the NICU for further observation due to his oxygen stats being in the low 80's. We began to grow impatient for them to bring him into my room so the rest of the family could see him, so my husband called out nurse and asked her when we could see our son, she said a doctor would be coming in to talk to us soon, and that's all she could say right now. My heart sunk, my mothers intuition knew something was terribly wrong with my new baby boy. As promised, the doctor came in and in a very matter of fact way told us that they believed our son had a heart defect which was causing his oxygen to go below normal but they needed to transport him to Children's Health Care of Atlanta Egelston because they were the best pediatric cardiac hospital in Georgia and our local hospital could not deal with such complex issues. Only hours after giving birth to my son, I watch him and my husband leave via. Angel Care to Atlanta, GA to see what exactly was wrong with him. I was made to stay in the hospital until the morning so my doctor could give me the ok to leave and make the 2 hour drive to Atlanta. Once there I was met by my husband who said very little and looked rattled with sadness as he clutched some papers in his hand, he lead me to the cardiac ICU where our son was being looked after by a team of nurses and doctors around the clock. The sight of him with IV lines and tubes going into his little body was almost too much for me too handle. A nurse lead me over to him and got me a chair, I cried as I stroked his tiny hand. A doctor came over to me and began telling me what was wrong with my son. It's a very complex defect he said, it's causing his blue and red blue not to mix properly which in turn was causing his oxygen to be lower then a normal baby. He told me it was called double outlet right ventricle with transposition of the great arteries, with a straddling mitral valve and a non-restrictive VSD. I had never heard of such a thing before, a nurse began explaining it to me in terms I could understand which I think only made it worse after I realized the severity of it. What can be done I asked thru my tears, well the doctor which I now know as Dr.Wolf, said we aren't sure just yet, his heart defect is complex we are looking at a few options, one is an arterial switch and the other is called a Glenn shunt. We want to monitor him for a while and see how he does breathing on his own, we may end up not doing a surgery until he is older and bigger. He spent the next 3 days in the cardiac ICU, and was then moved to the cardiac step down unit, where he spent 3 more days. I was sitting in his room holding him when Dr.Majhd Machol, a doctor who I just love and think is the absolute best at what he does came in, he explained to me that they would be sending Colt home to get bigger and a little older before they preformed the first surgery, which surgery that would be they still did not know. I was so happy, but going home meant a lot of responsibility on mine and Robert's end. They set us up with Dr. Jane Todd a cardiologist in our home town that Colt would have to see once a week, he was on meds for swelling, acid reflux and blood pressure, he also required breathing treatments once or twice a day. I didn't care all I knew was that my husband was on his way down to Atlanta with my daughter to take baby Colt home for the first time since he had been born!
Once home we had a wonderful homecoming with balloons and family ready to greet baby Colt. We showed him his room for the first time, and I got to bath him for the first time and put some of HIS clothes on his. I was so happy, the sleepless nights that came along with having a newborn didn't even bother me, I would sit up all night with him if I had to, anything was better than being in that hospital. The next couple of months he did well, he was able to celebrate my husbands, mine, and my daughter's birthdays, all which were in July. On July 30, I got a call from one of his doctors, Dr. Martha Clabby, she was calling to tell me that his cardiologist here in Dalton was a little concerned with Colt's visit the previous day where his oxygen stats had been in the low 70's, they wanted Colt to be down at CHOA first thing in the morning for a cardio cath, so they could see why his stats where dropping. I was so worried, thinking this might be it, time for the surgery. Robert, myself, Colt, and my in-laws made the 2 hour trip back down to Atlanta and this time was way more emotional for me that last time, I cried the whole time, while we were checking in, while we were waiting to be took back to the cath lab and while Robert and I waited with him in the room while a tech did a EKG and ultrasound of his little heart. Colt was tired and cranky because they wouldn't let him nurse and that made it worse on me. They doctor who was doing the cath came in and explained everything to Robert and I, and whisked Colt away. 3 hours later they called and said everything had went good and we could come see him. He was pale, and they telling us he was going to have to have a blood transfusion, so we signed the papers, his breathing was hard and that worried me, I kept looking under his blanket at his chest which looked like it was doing so much work just to take a single breath. They then informed us that Colt would be staying overnight because they wanted to observe him for 24 hours. I broke down because I didn't know if I could handle being at the hospital by myself again, my husband, who was the only one working, had to go back to work the next day. With a heavy heart I said my goodbyes to my husband and in-laws and settled myself and Colt into the all too familar cardiac step down unit. The next day the doctors that I had became so familiar with came and to tell me the plan for that day, a procedure called a balloon atrial septostomy, what that meant was that they would go in through the IV line from the cath the day before and take a wire with a tiny razor blade and go thru one of the holes in Colt's heart to make it bigger so more blood could mix, hoping to by him a little more time before the surgery, they still wanted him a little bit bigger and older. They took my baby away for the second time in 48 hours and I was alone in his room, with my thoughts, which can be a bad thing for me. 3 hours later he was back, asleep but with good news, all had went well with the procedure and he oxygen was staying in the mid 80's and he wasn't on any oxygen at all, that was with him breathing on his own! I constantly sat and watched that oxygen moniter for the next 3 days, it became a love/hate relationship, every time it would get close to 81 or 80 I would say a quick prayer that it would not go below 80! Finally he was able to go home, they told me the next time they say me it would most defintely be for surgery, they keep telling me that this was only a temporary fix. We went home and resumed our "normal" life of cardio visits every week and his round the clock meds, hoping that it would be at least 6 months until we had to go back to CHOA for the surgery. We were wrong again.
On August 31 2011, we were at his cardiologist in Dalton for a weekly visit. The nurse who was checking his oxygen levels looked worried as she read the numbers on the meter, she went and got Dr. Salee. Colt's oxygen was at 61, they said he could not wait he had to go back down to CHOA immediatly via ambulance. So we were off to Atlanta again, I called my family to let them know I would call them as soon as we made it down there and I would let them know what they decided to do. Once down at CHOA Colt was back with the familar nurses and doctors of the cardiac step down unit,the doctor was concerned his oxygen was staying in the 60's and he said they would feel more comfortable if he was in the CICU, I lost it and broke down at the thought of having to spend the night in the waiting room without my baby, but whatever was best for Colt. The next morning I waited on news from the cath lab, and the doctors, hoping that they would decide something for sure. They did. Around 5 that evening after my in-laws had came down to keep me company his doctor told me that they decided surgery could not wait and he would be having his first surgery a Glenn bi-directional shunt the next morning at 6am. I was relieved and devistated all at the same time, I called my husband and parents and told them to get down there as quick as they could. They did and we were all together praying and crying for Colt's safety during surgery, The next morning I was unable to hold him because he was hooked up to so many cords, and IVs. My husband and I walked with him to the door of the OR, kissed him and said our "see you laters". We waited in the surgery ICU, and 3 hours later his surgeon came out to tell us the surgery had been a success and he was resting in the Cardiac ICU and we could all go see him later. We finally got to see him about 2 hours later, he looked so pitiful with his newly bandaged incision and what seemed like millions of IVs and tubes, and a ventilator running thru his tiny body. I stroked his hand and whispered softly that Momma was here. I wanted to take all his pain away and make it my own. My family came in to see him and once they were satisfied that he was going to be ok they all made the drive back to Dalton, where we live. My husband and I stayed and slept in the waiting room until 3 days later he was moved into a regular room so we could be with him 24/7. He was doing so good after such a major surgery, they were letting him bottle feed again, and he was smiling a little. My husband and I figured we would be in the hospital for a few more weeks but much to our surprise only a week and 4 days after having surgery Colt was given the Ok to GO HOME! His doctors were so pleased with his progress, his oxygen was staying in the high 80's low 90's and his incision was healing good. We were a little scared to pick him up seeing as though his breast bone had been cut, but we went thru an after surgery class that told us how to care for his incision and how to and not to pick him up. We also left with about 5 different prescriptions. The first week Colt was home was hard, he was cranky and sore, and cried A LOT! He went and saw his regular cardiologist one week later and they were pleased with how well he was doing with oxyegn at 88 and the EKG and Ultrasound of his heart looked good, we went back down to Atlanta two weeks later to get an X-ray of the breast bone and so his surgeon could check his incision. He was very pleased with how well he was healing and told me and my husband we were doing such a great job with him at home and they hoped they wouldn't have to see him again until he was 3 or 4 for his next surgery which will be the Fontan.
Today Colt is a happy and playful 20 month old. He loves to eat, play with his big sister, and watch Elmo. We have learned how precious and short life can be and now we are so much stronger as a family because of what we have been through. I never take anyone or anything for granted anymore.

Feb. 4- CHD Awareness Story- Katie's Story

Katie was born on March 28, 2006 at Children's Healthcare of Atlanta at Egleston. We knew ahead of time that she would be born with Hypoplastic Left Heart Syndrome (HLHS). They were able to see at my 19 week ultrasound that she was missing one of the chambers of her heart. We traveled 3 1/2 hours from our home in Tennessee to Children's Healthcare of Atlanta for all 3 of her open heart surgeries and any other care that she may need that deals with her heart. Katie did wel,l for the most part, after her 1st two surgeries with little complications, but the Fontan was definitely a challenge. After the Fontan, we couldn't seem to get rid of pleural effusions around her lungs and even came home with pigtail catheters on each side that we had to drain every day at home. She was on the verge of being placed on the transplant list in Jan. 2010 when finally by the grace of God the fluid dried up. In her short life she has had 3 open heart surgeries, 8 heart caths, a g-tube placed due to a paralyzed vocal cord during her 1st surgery (it was removed on her 1st birthday), migraines, lots of medicine, and numerous hospital stays mostly due to the pleural effusions, She is doing well now. She is in 1st grade. She enjoyed playing softball and is now taking a dance class. She loves doing most things that a 6 year old little girl would do.