Tag Archives: HLHS

Presenting our 28th warrior, Gabriel!

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Super Gabriel!

(Story and photos courtesy of my Lisa Vallejos, founder and president of the non-profit organization Gabriel’s Gift.. Oh, and he she just happens to be the mom of a superhero!):

“‘Oh, the places you’ll go’ by Dr. Seuss is an inspirational story for kids of all ages that was somewhat of an anchor for us during Gabriel’s hospitalization (and after!). We chose to open with this quote because we want you to first of all, have hope. Embrace it. The possibilities are endless and our story is just one of many that will inspire you to expect miracles.

We learned about Gabriel’s diagnosis while he was still in utero; we were fortunate enough to have an ultrasound technician who noticed something wrong with his heart and we were immediately referred to a specialist. After meeting with the pediatric cardiologist, we were presented with 4 options: terminate the pregnancy, compassionate care, the Norwood procedure or a heart transplant. After many sleepless nights and days spent in research, we decided to proceed with a heart transplant and began the process of finding the best Children’s Hospital in the nation for transplants. Imagine our surprise when we were informed that Denver’s very own Children’s Hospital has one of the best heart transplant programs in America!

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Baby Gabriel : )

Gabriel was born big and strong and was transferred to Children’s Hospital about 36 hours after he entered the world. When he arrived at Children’s, the Transplant Team worked around the clock to evaluate him, confirm his diagnosis and establish a plan of action. Within 24 hours, Gabriel was listed on the UNOS transplant list. We were told that the wait for a heart could be anywhere from 3 to 6 months and we prepared ourselves for the duration. However, we received a call when he was 13 days old that there was a match and the transplant team was flying out immediately to check it out. We waited on pins and needles to hear from the retrieval team while our family raced to get to the hospital.

At about 8:00 p.m., Gabriel was wheeled into the operating room while we walked beside his crib. We left him at the door and went out to the waiting room and settled in for the long night. About every hour, the transplant coordinator on duty would come out and give us updates; his chest was open, the team had landed with the new heart and was on their way, his old heart was out and his new heart was in. When his new heart started beating on its own, there were shouts of joy in the waiting room. It was now 3:30 a.m. and we were all physically and emotionally exhausted.

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Heart donor, sweet Kylie Grace.. “My life is your legacy. May it bring you joy. Love, Gabriel”

When we were allowed in to see Gabriel, it was a shock. He was swollen to about three times his normal size and had IV’s in at least 8 different places. There were so many medications flooding his little body but it was easy to see beyond the trauma of his surgery because we knew this was his only chance at survival. He remained swollen for quite a few days but eventually returned to normal. He opened his eyes, got his chest closed up and the ventilator removed. In less than a week, he was moved out of the Cardiac ICU and into the Infant Care Center.

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A true warrior in every sense of the word.

We brought him home 11 days after his transplant.”

Our family met Gabriel and his beautiful family a few years ago. Boy were we lucky. We were brand new to the area and had yet to meet any CHD survivors in Colorado. We truly lucked out meeting them and we feel the same way to this very day. For the past 3 years we’ve had the privilege of getting to see Gabriel grow and grow! He’s doing incredible things and there is no stopping this little man. He has a thirst for life, a huge spirit, and never ceases to amazing everyone who has the pleasure of meeting him. Rock on, Gabriel! We love you big guy!

“Oh the places you’ll go”….

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Check it out! Gabriel and Lisa are spokespeople for Donate Life! How awesome is this?? (Are you a registered organ donor? hmmm? : )

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2 cuties- Gabriel laughing it up with his baby sister, Eden!

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Super Gabriel even wrestles AND plays football!

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Gabriel, his mom Lisa, and sister Eden… this explains where Gabriel gets his hilarious sense of humor!

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In sheer delight watching the whale show at SeaWorld! (this was during his Make a Wish trip!)

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Gabriel wearing his Holter monitor so well!

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Someone loves their sister VERY much… 😀

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At the most recent Donor Dash! 2012!

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“Mom, I can’t say S anymore!” – Lisa, Gabriel’s mom
This is a perfect example of Gabriel’s personality. So cute and so funny…

402754_10150632811784847_2089480477_nWe love you Gabriel!!

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**Gabriel’s Gift is a 501(c)3 that was founded to provide assistance to families who have been impacted by congenital heart defects as well as to raise awareness about CHD.**

**Register here at Donate Life to become an organ, eye, and tissue donor: Donate Life**

Presenting our 27th warrior, LaShawn!

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“As a family, we have been on one long journey together and have learned so much from this amazing little boy.” -LaShawn’s mom

“My son LaShawn was born in 2008 with HLHS / hypoplastic left ventricle double outlet. He is now four years old and has been thru a lot. He has a total of 14 surgerys tucked into his belt. They include four open heart surgeries. Two of those open heart surgeries included the the PA Banding (pulmonary artery banding). His first banding sliped blocking blood flow to his lungs and causing him to be placed on a vent. Three days later they had to open him up and redo the banding. LaShawn has had the Glenn Shunt at 6 months old and did much better this time and was home with in a week, growing and being active. LaShawn then had the Fontan in May of 2012. He has also had many other surgeries including cathaterizations of the heart as well. He also needed a feeding tube. He was in the hospital for 5 weeks and didn’t come home until the  tube placement was complete. He’s also had an operation to fix his feeding tube site when he no longer needed the feeding tube. He has taught us what love and pain truly are. LaShawn has taught us compassion and filled us with a need to help others in any way we can.”

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A little warrior getting through open heart surgery. There is tons of fight inside this little guy.

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LaShawn with his mommy : )

How beautiful is this kid? You can tell that he has a beautiful family by his side, as well. And as us members of a “heart family” know very well, support makes all of the difference. LaShawn receives strength from his biggest supporters and I can definitely attest to this- his family receives strength from LaShawn as well. Completely amazing and so inspirational. Please visit LaShawn’s Facebook support page:

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Go “like” and show some love and support!! Keep kicking CHD’s butt big guy!!

Presenting our 26th warrior, Dylan!

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“Nothing can break his stride.” -Dylan’s mom, Talitha

Dylan’s mom, Talitha, shares her son Dylan’s brave journey with a critical congenital heart defect…

“When I found out I was pregnant, I was absolutely thrilled. I had always wanted more children in addition to my 5 year old boy, Jordan. The pregnancy was great without any major complications and I went 6 days past my due date! On Thursday, May 26, 2011, my dad’s 50th birthday, Dylan Dainger Snyder was born. Labor went fairly quickly and I only pushed for 8 minutes before he made his grand appearance. It was the quickest and best delivery I could’ve imagined. He was 8lbs. even and 20 3/4 inches long. His dad, Jason (Jay), joked that I pushed a pound per minute! I felt great afterward, was up walking around and didn’t even feel much pain. After Dylan was born, both Michele (J’s mom) and I had commented to the nurse at separate times that his hands and feet were a weird shade of blue. She assured us that it was normal for newborns.

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“Dylan the day he was born, before we knew anything. If you look close, you can see his blue-ish feet.”

Throughout the rest of our stay at the hospital, I had noticed odd things such as his rapid breathing without pausing and not nursing as well as my first son did. The nurse again reassured me that his latch looked good and newborns normally breathe quickly. The last thing that concerned us was his inability to urinate. They took him down to get an ultrasound of his kidneys to see if they were normal, and they were. At some point during our stay the pediatrician at Sacred Heart Hospital in Eau Claire, heard a heart murmur and asked if there was any family history of congenital heart disease. As far I knew, there was no family history. She then reassured me that it’s normal for newborns to have a murmur at birth and it usually closes up after a couple of days. She ordered an EKG to confirm it was a murmur. She then told us we would have to follow-up in Marshfield, WI since there were no pediatric cardiologists in Eau Claire. We were told that until Dylan peed on his own, they wouldn’t discharge him. Late Saturday evening a tiny bit of orange-ish looking pee was in Dylan’s diaper. So they sent us home and told us to make sure we keep our appointment in Marshfield, which wasn’t until the following Tuesday. Also, that if he starts turning blue, drive him to Marshfield. I told the doctor Marshfield is any hour and a half away from our house and if he is turning blue, wouldn’t I want to take him to ER? She said that if we took him to our local ER, they wouldn’t be able to help him and it would delay care longer than if we just drove him there ourselves.

Sunday night, May 29th, I had noticed Dylan was no longer eating at all and was extremely fussy. He also still hadn’t peed since we were at home. I took him to Sacred Heart ER, despite the doctors orders to drive him to Marshfield, early on Monday May 30th, 2011. When we got there, Dylan was 95 degrees and had an O2 saturation of 50. Immediately there were multiple medical staff surrounding him. Within hours, a helicopter team arrived to fly him to Amplatz Children’s Hospital in Minneapolis, MN. The same pediatrician was also on call that morning that had worked the weekend and told me I did the right thing bringing him in when I did, even though I tried to convince myself I should’ve brought him in sooner. The helicopter nurse with over 30 years experience working with cardiac kids, told me when the O2 saturation for the hands and feet were so different, that usually means there is something wrong with their heart and they were giving him a shot a prostaglandin because that is what was keeping him alive. Later, I was told by the doctors at Amplatz that he may not have made it if I would’ve waited a couple of hours before bringing him in. So I’m happy I followed my instincts.

Jason and I drove to Minneapolis, which felt like the longest drive of my life even though it was only and hour and a half away. I didn’t know when we arrived if Dylan was going to be alive or not. When we finally arrived, we were told Dylan was very “sick” and had suffered multiple organ and respiratory failure due to complications of congenital heart disease. It was by far the worst feeling in my life. It felt like the room was closing in on me. I started sobbing and asked J if I was dreaming. The doctor explained that Dylan has critical aortic stenosis, hypoplastic left heart syndrome and a slightly small mitral valve.

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“What Dylan’s Heart looked like prior to his first surgery.”

There’s a whole different world out there that I had never even considered until I was thrown in it. It is the world were so many children are in the middle of fighting for their lives right at this very second, proving their strength and will to live. Everyday is a gift. They are all such an inspiration!

“Dylan after his first open heart surgery.”

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“Dylan’s heart after his first surgery, the DKS with Sano shunt modification: 6/6/11”

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“Dylan’s heart after the Glenn procedure: 11/8/11”

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“Dylan recovering in PICU after his Nissen – 5/11/12″

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Dylan conquering CHD for a third time.. (3rd open heart surgery, January 31, 2013)

When I was pregnant, this was not anything close to how I imagined our lives to be. Jay and I took the initial news very hard. Luckily, we have each other for support which has made all of this much easier. It’s hard not to think about the worst but we are trying to remain optimistic and strong, for Dylan and each other.

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“Getting some mommy love on his 1st Birthday!”

The cardiac team at Boston has to take a staged approach with Dylan because his heart was not in good condition for the biventricular repair to work. What is common with kids with HLHS, is a thick fibrosis tissue forms around the left ventricle, making it impossible to grow. The surgery plan was to remove the tissue, add a shunt going to the lung, partially close the hole in his atrium, and look at the mitral and aortic valves to see what condition they are in. Then, in approx. 6 months to 12 months, come back to Boston to completely do the biventricular repair.

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Sometimes, after all of the tissue is removed, the left side grows so rapidly, they are able to do the bivent repair within a few weeks, but that is very rare. In Dylan’s case, the whole left side was completely encased with this tissue as was the mitral valve (which looked pretty good!). Dr. del Nido said Dylan’s aortic valve was pretty damaged and at some point in his life, he most likely will need that replaced via open-heart surgery. Although, they are able to use it right now. The GREAT news is that Dylan’s left ventricle is almost the size of his right and that they were able to completely close the hole in his atrium and del Nido thinks Dylan has a great chance for the two-ventricle pathway to work! Only the minority of kiddos born with HLHS even qualify for the bivent repair, so we feel so blessed right now even though we have to take a longer route to get there. Also, Dylan still has quite a bit of collateral flow to lungs still, so they decided not to put in the shunt for fear of flooding the lungs. He suspects that as long a Dylan has a Glenn, he will continue to develop these collateral vessels. He said there is no point in doing anything with them now because they would have to redo them right before surgery anyway. So right now they are going to use them to their advantage until they are able to take down the Glenn. Dr. del Nido also thought that if Dylan benefits even a little bit from being on oxygen to prevent as many collaterals as possible from growing, it would be worth it. So it looks like he will be on oxygen until he can have his full biventricular repair.

As of right now, we know for sure Dylan will need at least two more open-heart surgeries in his life. One for the bivent repair, and one to replace the aortic valve when his starts to fail. They will monitor him closely throughout the next few months to see how quickly the left side is growing with echos and CT scans (which can all be done in Minneapolis!!). When they feel we are getting close, we will fly back to Boston to have a heart cath. Dr. del Nido said the numbers need to be extremely accurate with no room for error or question, and since they have specialists here for that, he wants us in Boston for the heart cath. Then, when the numbers look right, he will do a full biventricular repair on Dylan. He seems confident that this is the best path for Dylan. That makes me feel confident about it too!”374269_207439439399417_474458691_n

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Dylan and his beautiful family!

Follow Dylan’s story at: www.caringbridge.org/visit/dylansnyder  and also at: Supporters of Dylan Dainger- HLHS Warrior (Facebook support page).

Now that you’ve read Dylan’s story, aren’t you in complete awe of this beautiful kid? When I began compiling his story, through the generosity of his mom letting me piece together something (which wasn’t very hard because she does such an awesome job keeping supporters updated, even as busy as she is!), I found myself smiling like crazy at Dylan’s photos. We know that all children have something wonderful to add to this earth. But Dylan… buddy, there is just something incredibly extra special about you. You make hearts MELT. Mwah!! You keep rocking those scars like the rock star you truly are!!

Presenting our Valentine’s Day warrior, Reid!

Can you believe that it’s already Valentine’s Day? I don’t know about you all, but seeing the color red and seeing the cheerfulness spread in a classroom of kindergarteners and 1st graders this afternoon was enough to make me start loving “Heart Day” more than Christmas! For all of us folks who love someone with congenital heart disease, the shape of a heart and the color red have an even bigger meaning for us now. They resemble something of a much bigger meaning. Speaking of  “Heart Day”, check out this special cute package that is named, Reid:

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Now THAT’S a sweetheart for Valentine’s Day. Reid’s mom, Monica, says you’re welcome. Please read Reid’s story that has been so thoughtfully and courageously put together by his mama:

“Reid Landon was born March 29, 2012. My OB ended up inducing (03/28/2012) me due to Reid heart rate dropping while we were being monitored at my OB’s office. There were issues throughout the inducement because Reid’s heart rate kept dropping, so they would back off the inducement medication. Finally 14 hours later it was time to push, when Reid was born he had the cord wrapped around his neck, his arm & his torso. He was so blue/purple! I was totally freaked out. I was able to see him for approximately 5 minutes then I was taken into surgery to get my tubes tied. While I was gone my son & his wife, my oldest daughter & my father were with Reid. Later Reid’s family doctor came to see him & gave him a clean bill of health.

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We went home & Reid was diagnosed with allergies at 4 months of age, which I thought was weird but I trusted Reid’s Doctor so I started giving him the allergy medicine his Doctor prescribed even though it didn’t seem to help with the wheezing. Then a week before Reid turned 7 months old his wheezing got so bad it sounded to me like he had pneumonia, so I took him in to see his doctor which agreed with my diagnosis….. He sent us to get a chest x-ray to confirm & to decide if it was bacterial or viral pneumonia. We were sent home & told Reid’s doctor would contact me with the results. Approximately 3 hours later I received call from Reid’s doctor’s nurse… Who told me Reid did have Bacterial Pneumonia & put him on antibiotics and then casually she told me, Oh by the way, Dr…. noticed in Reid’s chest x-ray that he has an enlarged heart!!! (So I AM TOTALLY FREAKING OUT AT THIS POINT) the nurse still sounds like she is telling me that my son has green eyes, not that something major may be wrong with my child!!! So they get an appointment scheduled for Reid to go see a cardiologist at Primary Children’s Hospital in Salt Lake City, Utah. When she called back with our appointment information, she told me they didn’t believe there was anything wrong with Reid & that it was only precautionary they were sending him! (I AM STILL TOTALLY FREAKING OUT).

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Reid’s appointment with his Cardiologist wasn’t even a week from his “pneumonia appointment”. We (Reid, his Momma – Monica, his grandfather – Mike & his sister – Allyssa) went to this appointment. They did an EKG & the Cardiologist listened to Reid’s heart & then he sent us to get an Echo done. After 3 hours getting an Echo I started to freak out again, thinking that this seemed like a really really long time! After Echo was finally done we were moved from one room to another & then another. At which time I KNEW something was wrong. The Cardiologist finally came in & sat down with us & said, there is A LOT WE NEED TO TALK ABOUT, BE PREPARED THERE IS A LOT OF THINGS WRONG WITH YOUR SON’S HEART! My heart dropped & I felt like I was going to die that very moment. The Cardiologist was wonderful in going slowly & explaining everything in great detail. Reid’s Doctor then explained that my precious baby boy had multiple diagnosis, as followed; 1) Tricuspid Atresia, 2) ASD, 3) VSD, 4) Transposition of the Great Arteries, 5) Mild Hypoplasia of the Aortic Arch, 6) Pulmonary Hypertension. We were all in total shock. His plan at that point was to do a Cardiac Catheter in 2 days & then do his 1st Open Heart Surgery at the end of the week. We left & a few hours later I received a call from Reid’s Cardiologist saying that he discussed things with his Surgeon & they decided that I needed to bring Reid back that day to get labs done & that the very next morning at 6 am Reid would have his 1st Open Heart Surgery. Wow was I in total Shock…

We stayed the night in Salt Lake City because we live 70 miles away & 6 am is very early with the NPO issues. Reid had his Pulmonary Artery banded to reduce the blood flow going to his lungs. The surgery went very well. They called to let me & my father to go in the CICU to see Reid. As I touched Reid’s hand, he started to hold his breath due to the pain & then his oxygen saturations dropped, his heart rate dropped & Code Blue was called. We jumped out of the way while we witness all the medical staff working on my beautiful little man!! If my father hadn’t been there I definitely would have been on the floor. They had to do chest compressions & had to put him back on the ventilator. A Fellow inserted the tube in Reid’s throat. Things then calmed down so that the doctors could talk to us & explain what was going on & what to expect as we moved forward.

Reid was on the ventilator for 4 very long days & was in the hospital for a total of 10 days. Every step was scary & hard especially seeing how I’d just found out about Reid’s CHD’s so recently.

Everything was starting to be a routine with his medications & a very strict schedule to make things as stable as possible for Reid. I started looking back at pictures & researching his defects & realized if I would have been more aware of CHD I would have possibly been able to get Reid help earlier in his life. The things I noticed; his complexion was grayish; especially his lips, he would tire out would tire out while he was eating & end up falling asleep, while eating he would sweat A LOT, he would eat a lot more frequently than any of my other children, his heart beat was hard & faster than I thought was normal, & he was ALWAYS wheezing. I looked back at all the pictures that were taken the day he was born. While I was getting my tubes tied my other children were with Reid & holding him & taking pictures. In the pictures Reid was hooked up to an Oxygen Saturation Machine. In these pictures you can see the readings which ranged from 83 to 87. I was NEVER made aware there was an issue!!

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On January 17, 2013 Reid was scheduled to get a Cardiac Catheter to measure the pressures in his lungs to decide if we could proceed & have the Glenn Surgery done. The results from the Cath indicated that we were good to proceed & one of his doctors said we would probably proceed with surgery within the next 4 weeks. On January 19, 2013 in the morning I had noticed that Reid had been coughing & at this point really having hard time breathing. Fearing the worst I took him to our local hospital (very reluctant due to them not finding his CHD at birth) they tested him twice for RSV. The first test came back negative but the second one was positive & due to Reid’s Cardiac issues the transferred us to Primary Children’s Hospital. We were transported by Ambulance & admitted. Reid spent 11 days in the hospital for RSV. Due to RSV his Glenn Surgery has been pushed back 6 weeks, so that his lungs can fully heal.

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CHD week means so much to our family!! I was excited to be able to share Reid’s Story. Please watch for any warning signs & get checked if you are concerned. Reid is a huge example that NOT ALL CHD are diagnosed during pregnancy or after birth. We are just grateful that all his defects worked together to keep him alive. I have created a page for Reid for prayer warriors to see what is going on with Reid & his family: ‘My Miracle Baby Reid Landon’

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All too many precious lives like Reid’s are in danger of undiagnosed CHDs. In honor of babies like Reid and all over the world (and Valentine’s Day!) here is an excellent photo to memorize:

(to learn more, visit http://pulseoxadvocacy.com/ and http://thecorbinstory.blogspot.com/p/pulse-ox-learn-more.html)


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Presenting our 13th warrior, Keely!

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Look at this beautiful warrior! Her mom, Emily, has been so incredibly gracious to share her story with us here at Queen of Hearts. And we could not be more lucky. Once I immediately connected with her mom and saw the photos of Keely smiling, I couldn’t stop smiling! Infectious I tell you! I still am partial..but all CHD warriors are extra beautiful. Keely just proves that. Please read Keely’s story as told by her mom, Emily:

“Our daughter Keely was born with a numerous amount of complex Congenital Heart Defects (CHD) which effects 1 in 100 babies born. She was born with Hypoplastic Left Heart Syndrome (HLHS, meaning she has a single ventricle and most the structures on the left side of her heart are very small or underdeveloped), Pulmonary Valve Stenosis (blood is allowed to flow into the pulmonary artery but not back into the right ventricle), Ventricular Septal Defect (VSD, means not enough blood pumps from the heart into the aorta), Double Outlet Right Ventricle (DORV, meaning her aorta rises from her right ventricle instead of her left ventricle which is the normal chamber that pumps blood to the body) and a complete blockage of the AV canal. Keely also has 2 Superior Vena Cavas instead of one.

Keely was also born with “Heterotaxy Syndrome” which is a rare birth defect which involves the heart and other organs. The beginning of the word- hetero means “different” and the end- taxy means “arrangement.” In some cases of Heterotaxy Syndrome, the spleen may not work correctly or may be missing entirely. In Keely’s case, her stomach and liver were developed on the right side and she was born without a spleen. The doctors say that Heterotaxy Syndrome is what may have caused our daughter’s “unique heart.”

The doctors said that Keely will have to undergo about a minimum of 2 Open Heart Surgeries. The first Open Heart Surgery is called the “Bilateral Bidirectional Glenn Procedure” which repairs the top half of her heart and was done on March 19, 2012. The second Open Heart Surgery is called the “Fontan Procedure” which will repair the bottom half of her heart and is to be done around the time she is 2 or 3 years old.”

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Keep rocking that gorgeous smile girlfriend! You are a true warrior!