My CHD Journey… so far

*Last Updated: March 2018*

Here is it!  What many have been waiting for… my Congenital Heart Defect/Disease (CHD) Journey thus far.  I added lots of pictures to break up the writing a bit, plus everyone loves pictures. Enjoy!

Baby me around the time of my CHD diagnosis at 10 weeks old

I was born August 25, 1987, a supposedly 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 ate and 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 10 weeks old my mom saw that I was breathing very heavy (grunting when breathing to) 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 taken to the nearest ER and an on call intern who saw me in my mom’s arms in the waiting room for x-rays looked at me and knew something was wrong… that intern had learned all about Congenital Heart Defects, so he knew it was most likely my heart.  I was was rushed to get a chest x-rays and when the doctor came back said that my heart was very enlarged and most of the right side of my heart was missing… I was in heart failure.  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 it did not look good. 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 had a severe Congenital Heart Defect called Tricuspid Atresia with a very Hypoplastic Right Ventricle (my right ventricle never formed… it was just a piece of shriveled up tissue) and that I had to have an emergency heart cauterization surgery to re-rip a hole in my heart to save my life.  I had made it to the hospital just in time as another day or two at home and I would have died.
My cardiologist was very kind and caring to my parents.  I was discharged from the hospital 10 days later on a few medications and a special formula which consisted of concentrated Isomil with polycose added (basically formula with tons of calories/fat added) so I could gain weight as I needed to be at least 10 pounds for my first open heart surgery which I would have between 3-6months of age!
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Me in the hospital before being discharged after my diagnosis stay in Oct. 1987

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.  She would try to get me to smile and open my mouth to put a bit of formula in by syringe… then hope that I swallowed and did not puke it up.  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 1/2 years 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 did not want to accept that something might happen to me.

One of my famous smiles!

February 9, 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 my next open heart called the Fontan. The surgery went well.  Though it was successful in its purpose it did not 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!

Baby me a day or two before discharge after my PA Band

Soon after returning home I got dangerously sick with RSV!  I was taken back to Children’s Hospital and admitted.  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, 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, then had my first eye muscle surgery at 18 months old; which was during the time in between my two open heart surgeries (I have worn glasses since 9 months old).  Despite everything, I was a happy baby and smiled a lot!

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My dad and baby me.
My mom and baby me.
Me at about 18 months old in my glasses cracking my cute smile

On November 21, 1989, my parents handed me over to the doctors for my second and riskiest open heart surgery, the Fontan.  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 that was still fairly “new” (about 16yrs old) in the medical world.  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 was what 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 came out 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 did not have enough nurses around at the time), a one SVT/very fast heart rate episode where I coded (that code blue was very scary for my parents), a pacemaker scare (never got one though, I’m very grateful for that), and I was put on a special diet (medium chain triglyceride diet) due to milky drainage coming out of my chest tubes.  All things considered, I did pretty well with recovery.

Me during my Fontan recovery

I was discharged exactly one month (31 days) after my surgery which was just 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?

My older brother, Ryan, & I on Christmas morning 1989… 4 days after coming home from the hospital.

After that second surgery I was as healthy you can be having severe heart condition or “half a functioning 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, but other than that I was doing great.  I had another eye muscle surgery when I was 7 and I got four stitches in the my bottom lip from getting hit be a swing when I was 8.

Me at about 3 years old… about 6 months after my Fontan
Me at about age 5.

I got a little brother, named Aaron, when I was 11 years old and that was wonderful; I would 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 years old when the family theater 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 was in girl scouts from age 10 till age 14, which was fun and I made a few friends that way. I bowled, started at age 5, which I loved and years later I ended up being on my high school girls varsity bowling team (got my varsity letter in bowling and was the team captain my senior year). I event tried my hand at tennis and golf at one point in my childhood, but I never took a huge interest in either… so neither lasted very long, but I tried. 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.

Me with my older brother, Ryan, and little brother, Aaron, back in 1999 dressing up in our dad’s clothes for a Father’s Day picture (my mom’s cute idea!)
Me in 2004 getting with the Varsity letter in Bowling I earned.

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… well to people I knew anyways as I was very shy around people I did not know (I had to warm up to you and trust you before I was a chatterbox). I had a few friends and did lots of “normal” childhood things with my friends like go to the movies and have sleepovers (though I did not sleep over any friend’s houses till I was about 9 or 10 when could really communicate with other parents when I needed my medication and if something felt off). My parents always told me growing up that everyone has challenges in life and that everyone has things they can not do. I remember the few times I got upset that I could not do something, my parents sat me down and listed all the things I could do, then they listed things that could not do to show me that everyone has limitations with their mind and body.

Socially, I had some trouble and go teased a lot (I was shy, had glasses, could not 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 (still do) and I have always enjoyed many of the simple things in life. Unless you knew I had a severe heart condition, then you never knew that I had anything wrong with me unless you saw the scars on my chest. My parents were always 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 at that age. 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 have had open heart surgeries, what medications I take, etc, but I just did not know the all the seriousness of it (what it all really meant). 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 grateful my parents never let me give up on things and gave me a pretty “normal” childhood. I am thankful for that!

Me about age 8 or 9 rollerblading.
Me at age 17.

At age 14 I was diagnosed with yet another medical issue, a form of congenital Scoliosis (I was born with an extra vertebrae in my lower back and my hips are not aligned) that caused mild to moderate curve in my lower back. My back is monitored, but because of my heart, not much can be done. I can get bad back pain (seems like more as I age), but it something I live with and I try not to have it get in the way of living my life. It was not 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. All the tests found nothing, even the allergy testing came up with nothing. It was very weird. From then on I realized that anything can happen It made me more 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 do not take a thing for granted.

Me with my brothers… Christmas 2002

I was diagnosed with Super Ventricular Tachycardia (SVT’s aka very fast heart rate), when I was 18 and was put on a low dose of a beta-blocker for that (which calms the vessels/muscles in my heart and slows down my heart rate ). 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 did not even tell my parents right away. I know now that I should have and I should ALWAYS tell someone if something is not right, but it was hard for me to accept that something was wrong. Since the beta-blockers I have been SO much better. As years have gone by I was getting more SVT breakthroughs (my body started to become immune to the medication dose). In April 2014 (when I was 26) I was hospitalized for a few days to change to a stronger medication to control my SVTs. Unfortunately, I got really sick and it ended up being a very rare allergic reaction to the medication, so I was switched back to my beta-blocker. A few months after that whole ordeal the dose of my beta-blocker was doubled and since then I have gone back to “status quo” of when I was first put on my beta-blocker at 18. I rarely get SVT breakthroughs right now, but when I do it can be a bit scary for sure.  Luckily, I have not had one ER visit for my rhythm issues (yet), which is a very good thing. Rhythm issues like SVTs are an extremely common “side effect” of having a Fontan heart (or a complex CHD in general). It can get frustrating, but I deal with it the best way I can.

My 18th Birthday!

Other medical things I have dealt with up to now are: I had my third eye surgery in July of 2008 and all went well. In Spring 2013 I had my first heart cauterization in adulthood. It had been about 22 years since my last heart cath, so they really felt it was time to get inside pictures of my heart and measure my heart pressures… also to see if anything needed to be done like stent anything. Luckily, all went well other than the fact that they ended up having to go through my neck as both sides of my groin areas were damaged from childhood caths and open hearts. Nothing had to be done during the cath as everything looked really good for an “old” Fontan heart. I have had two ER visits since I have been 18… the first was in July of 2009 due to bad food poisoning and the second was two days after my last heart cath due to muscle swelling in my neck. I also, see a liver doctor once a year (since 2011) because all Fontaners will get some liver damage/congestion (due to the Fontan circulation)… luckily I just have mild to moderate liver fibrosis and my liver function is still really good.

Me after my 2013 Heart Cath… that is my husband, Chris, next to my bed.

In December of 2011 I graduated college with a Bachelor’s degree in Psychology. I got married to the love of my life (my soulmate and best friend) in a simple courthouse ceremony on Dec. 21, 2011. Chris accepts me for who I am and not my heart condition, he is always by my side through anything (and we have been through a lot in the 9+ years we have been together). Chris and I have moved cross county 4 times since we have been together (SE Michigan to Northern California, Northern California to SE Michigan, SE Michigan back to Northern California, and Northern California to Central Texas). In May 2016, my dad passed away very suddenly and unexpectedly, so that has been my biggest hurdle in recently, but his death has only taught me even more so how very precious life really is. Last year, my husband and I just bought our first house which has been a happy time in light of the sadness 2016 brought. We hope to have a kid in the near future, but we have not decided how yet as it is high risk for me to carry a baby. But however a child comes into our life, we will love it with all our hearts.

Living with a severe heart condition is not always easy, but it has taught me so much about life and what truly matters in this world.  Also, to cherish the present and take things one day at a time.  The biggest blessing CHD has given me, I feel, is the calling to be able to reach out and give hope to heart parents.  I have been part of the CHD community on and off line for almost 11 years now sharing my life story as well as being a CHD advocate sharing my knowledge (on CHDs especially on the Fontan).  I know since I started reaching out I have been able help so many even some very small way, but reaching out has been a big blessing to me in return as I have gotten to know so many amazing people.  Reaching out also paved they way to so many wonderful opportunities like being on the radio, being on TV, being in the newspaper/magazine, speaking at CHD events, and so on.  I have even gotten involved in the local CHD community and was a Co-chair for the Central Texas Congenital Heart Walk in 2016 & 2017.  Though the most special thing I have gotten in return from reaching out to the CHD community is meeting my two very best friends who happen to be amazing heart moms.

Me with my mom, husband, and little brother in the Spring of 2015
Every day I have little reminders that I have a CHD; from my scars to my medications to getting tired easily.  They remind me that each day I am so blessed and grateful to be alive (yes, I have said blessed and grateful a lot in this long post… but I really am despite everything that I have experienced in my life).   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.  I have an anxiety disorder and OCD which I have had since I was young… my CHD definitlely is the main cause of my mental illness, but I manage it the best I can and I am not ashamed to share that I struggle mentally sometimes (it is very common for CHDers especially complex CHDers to struggle with mental illness at some point in their life).  My CHD has impacted my personality in that fact that I feel it has made me a more kind and compassionate person… also more stubborn (though both my parents are/were stubborn so that could also be a genetic thing too. Ha!).  My CHD 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 am thankful for my life and the people in it that I love dearly.
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Chris and I getting married in the courthouse… my dad is the person in the background.
My husband, Chris, and I in Sept. 2017
 I can say that since loosing my dad, that I view life even differently which I did not even think that was possible considering I live with a chronic illness.  I realize more than ever that life is short and precious… and that none of us get out of it alive.  That despite whatever you are going through you need to find something or/and someone to hold onto.  That it is never to late to make something good out of your life because as long as you are alive, then you have time.  Most of all, let the people you love dearly know how much you love them… tell them often as you never know it that will be the last time you get the chance to tell them how you feel.  Do not have any regrets.  Trust me regrets can stink.  Lastly, the grass always looks greener on the other side… meaning everyone is going through their own challenges in life, so try not to judge too much.

Everyone has challenges in life, mine is my heart.  I can no control everything that happens to me heart wise/health wise, but I can control how I handle what I am dealt.  I hope that the way I am handling living with a severe heart condition leaves some kind of impact on the world, no matter how small.

“I am going into an unknown future, but I am still all here, and still while there’s life, there’s hope.” ~John Lennon

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My dad and I back in 2008.
Me with my dad and brothers in Orlando… Christmas 2014.

Well, that is it!  That is my life journey so far all summed up!  I will update this at least twice a year so everything stays up to date.  Thank you for your interest in my life and reading this very long post!

Hugs and Blessings,  Lauren B.


2 thoughts on “My CHD Journey… so far

  1. Thanks Lauren for your sharing! I’m so thankful to have come across your post. My 5 year old Daughter will be undergoing the Fontan procedure next month. And I’m so scared!

    Reading your post gave me more confidence that my Daughter will have a chance for a normal life post Fontan.

    Thank you once again!

    1. Hi Jessica,
      I’m so glad I can offer hope to you for your sweet warrior girl. Living with a Fontan is not always easy as it is not a fix or cure and all Fontaners will face issues throughout their lives (I have rhythm issues & expected Fontan liver damage as mentioned in my CHD Journey post), but we can definitely live full happy lives Despite whatever challenges we face having this lifelong condition. I don’t say normal life as what is “normal” anyways (who really is “normal”? Haha. We all face our own life challenges). I am blessed to have lived a pretty full life so far despite my heart condition. One day, one moment at a time sweet momma. Feel free to join my Facebook group (Lauren B, Adult CHDer with TA, HRHS) and/or message me anytime. Sending hugs and prayers to your sweet warrior girl and to you.
      -Lauren Bednarz

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