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2007

Keith today!

KEITH'S STORY

On October 22, 2006 my husband and I welcomed our first little miracle into this world. Keith William was born on time and under the presumption that he was completely healthy; with the exception of a minor heart murmur. However, at two months old Keith was diagnosed with a ventricular septeal defect that would require open heart surgery to be fixed. It’s a pretty regular procedure that is preformed in children with congenital heart defects such as our son’s. But Keith’s journey has been anything but normal. His first open heart was on April 4th, 2007. He pulled through it very well, and the vsd was fixed. However he went into partial heart block due to some nerve damage caused by the surgery, and required the implantation of a pacemaker before he was able to leave the PICU. We were also told that during his first surgery the surgeon had discovered that his mitral valve would at some point need to be replaced. They were predicting that he would be about five or so before this would be necessary. After a long stay at Children’s Mercy; Keith was sent home to grow so that the replacement surgery would be successful. Ten days after his hospital release he was back into surgery for that very procedure. The valve was replaced and Keith bounced back quickly. He is required to take certain medications that with a three year old can be very demanding, and he is looking at several more surgeries as he outgrows this valve.

Keith is now three and a very active little boy. Although it’s sometimes very challenging to answer his questions about why he has to do "this or that", it’s very rewarding to see that even through health problems such as this he is thriving. We are very blessed to have him and each smile reminds us of that.

Melissa Herd

ISABELLE'S STORY

Isabelle Ellis was born in February of 2005 with a complex set of heart defects that made her chance of survival non-existent without a series of life-saving surgeries, the first of which was performed on Isabelle in that March. The surgeries gave us hope for her life and gave us tremendous hope for her future. As Isabelle grew she required additional procedures and a tight regimen of medications. Isabelle flourished and blossomed into a warm, loving and playful child. Her spirit was kind and gentle. She loved people and animals passionately. In August of 2008 and at the young age of 3 years and 6 months Isabelle went in for her final operation and she never came home. For over 100 days she struggled through a long list of complications related to her surgery. Isabelle was dubbed the "Warrior Princess" by the hospital staff, who witnessed her strength, beauty and spirit. We clung to the hope that she could pull through but her heart started to fail. Isabelle was placed on an organ donor list for a new heart and we hoped and prayed that a donor heart would come in time; however the donor did not come and Isabelle passed away. In December of 2008 we laid Isabelle to rest in her hometown of Eudora, KS. She fought valiantly for life, but her tired body had taken enough. She survived much more than any doctor had expected and she made her parents proud. The hospital staff that knew her stated that she was one of the most popular patients to ever be on their unit (the CICU at St Louis Children's Hospital). Isabelle's joyful spirit lives on in the hundred's of people that gave us support and prayers.

In 2009, we partnered with CharitySmith to form a Memorial Fund called the Isabelle Ellis Heart Of a Princess Eternally (HOPE) Fund whose goal is to memorialize Isabelle and give hope back to the world. It is our sincerest desire that Isabelle's spirit live on through this fund and that it continue to grow and positively impact as many lives as possible. Specifically, the fund will partner with other grass-roots "heart" organizations, help guide and direct other families towards information, foster development in the nursing community and raise awareness about Congenital Heart Disease (CHD) and the importance of Organ Donation.

You can read more about Isabelle's story and her fund at: www.heartofaprincess.net/hope

Chris & Amanda Ellis

ZYRA'S STORY

My little girl, Zyra was born with Heterotaxy Syndrome Asplenia Type. She had her first surgery 3 days after birth about 2 hours after the surgery she went into cardiac arrest. The Doctor spent 20 minutes pumping her heart with her fingers. My baby was put on ECMO (heart and lung machine) on day 3 she had to come off. All her vital signs were not looking good. Then the Doctor said if she didn't start picking up her numbers then we would have to ween the medications and let her go. It seems as if she overheard him. She began to get better but it was so hard to see her fight in the situation she was in. It was the worst feeling I've ever felt in my life! Everyday I just watched my princes fight for her life. It seemed like every 2 steps we went forward sent us 3 steps back. One day I would get great news and then she would go down the next.

She lasted 10 days with an open chest so the risks for infections were really high. Her lungs collapsed and she had liver problems. They placed a "J- tube" for her feedings, since she had her intestines in knots. As a result from the cardiac arrest she had a level 2 brain bleed. It took time but she got stronger as the days went by.

We spent 2 months at Denver Children's Hospital. Then we finally came home. We were in and out of the emergency room at least once a month and most times we got to stay for a while.

After her Glenn was done in Sept 07 she has done great!! We are now on step 3 the Fontan.(please give us the best of luck) She turns 3 in March and will start Pre-school right after. She has the most noble personality and will win anyones heart over. Zyra has the most wonderful eyes full of life and will keep fighting as long as SHE can!!

Lucy Vite

BRIANNE'S STORY

Our daughter is 28 months. And when she was born we thought she was a healthy little girl. But 4 months later we had to life flight her down to children's mercy because she had a gagging reflux so bad that her oxygen level would go down. So they played around with all kinds of meds.did a MRI, a CAT SCAN, then they discovered she had a heart murmur then to take care of the gagging they thought just putting a g-tube in would take care of the problem and keep her food down. Well it didn't. So when they ran a test on her heart they found she had 2 holes in her heart. So we discussed that procedure and they said they wanted her to get a little bigger before they fixed the holes because the holes were not that big to worry about. So when she was 9 months old she weighed 13lbs and they said let's go in a fix them.

So everything went real well with that except the holes were bigger then what they thought they were. But the good news is that the minute she came out of surgery the gagging had completely stopped. So the moral of this story is instead of having docs run all kinds of tests on your baby and making you stay there for a whole month not knowing anything have them check the heart. But she is doing great now and doing physical therapy.

Brianne Kellerman

PEYTON'S STORY

My fiance, Jason, and I had a baby boy, Peyton. He was born October 19 2007. After our first sonogram, we knew there was an problem, but they didn't elaborate until the next one. We learned when I was about 2 months pregnant that Peyton had Congential Heart Disease. We were at at Children's Mercy in Kansas City and immediately finding out that Peyton had heart problems, we saw Dr. Rajan quick. He diagnosed it to a T. Peyton's diagnosis was one that the doctors there had NEVER seen before. The defect was Heterotaxy Syndrome Right-Sidedness Asplenia Type.

Peyton was also born without a spleen. I had an emergency C-Section at Overland Park Regional. Peyton was taken to Children's Mercy not long after he was born. Once they got him there, he was doing well. Completely opposite reactions than what we were expecting. We thought we would be in the NICU for months. But not Peyton, we were out in 11 days. No surgery or anything. He was doing so well. And we found everything that was wrong had something to balance it out to make him okay. It's strange, I know, but it worked to his advantage.

So they planned for surgery in the summertime. We were at the Peditrician once a week to make sure he was eating enough and gaining weight. He did awesome for his time at home. We saw his cardiologist, Dr. Raghaveer, every two weeks. And she said he was great. We had GREAT 4 months at home with Peyton. He was the happiest baby.

The beginning of March 08, we took him in for his scheduled Heart Cath to determine when he would have surgery. He did great during that. After, he was having a hard time coming out of anethesia. He was hyperventaling, just didn't do well. He was moved to the PICU, back to the Cardiology floor and then back to the PICU, where they said, we wouldn't be taking him home til after surgery. I believe he had surgery March 8th. It was a LONG 10 hours. The OR nurse came every 30 minutes, said everything was fine. When Dr. O'Brien was taking Peyotn off the Heart Lung Machine, Peyton started fiberlating, so he was put on ECMO. It was the hardest thing ever to watch. He was suffering for so long. Everyone was so great there. They did what they could for Peyton. He was on Paralyics to keep him still, they weren't even helping, he was going to withdrawls when they were trying to get him off. He came off ECMO after a lot of thought. He had a episode where his stats dropped below normal, but he was okay.

11 days after being taken off ECMO, he got infections. His heart was still open at this time. He had infections in his blood stream. They started him on meds and it took a toll on his kidneys. They were letting go of some of his fluid, but too much at one time. On March 31 2008 around 7pm, Peyton took a turn for the worse and he died. He was 5 months 12 days old. They worked on him for over 3 hours. They were shocking his heart, de-fiberlating, meds, everything that they could. He kept coding. The oncall Doc said if he codes one more time, he will die. It was the most horrible thing ever to watch. We made the decision to unhook everything from him. He may of been able to stay alive for a while, but would of been braindead.

I wanted to let you know that we've been in the same type of thing as you guys. And the costs are so outrageous, I know. Peyton's bill in the 27 days we were there was 1.4 million. We had a fund, to help pay for that. I just want you to know that I'm thinking of you guys and little Cooper. I wish you all the luck!!

Kylee Stalkfleet

AMELIA'S STORY

On April 9, 2009 my sister, Kathryn Braun, gave birth to a beautiful baby girl, Amelia Ryelle, weighing 6lbs 12oz. She was a thriving infant consuming 3 to 4 ounces at a time and gaining weight. We never thought anything was wrong with her and neither did her family practice physician. As a couple of weeks went by, friends and family commented that Mimi's skin looked grey and dusky. We still did not see it (our perfect little angel) but we thought we should get a second opinion. We live in a small town in ND and there is only 1 pediatrician in the town. Katie took Amelia to see her on May 1st, 2009. That night the pediatrician called Katie at home and they decided to send Mimi to a cardiologist in Fargo, ND, which is about 50 miles from Wahpeton, the next morning. Upon arriving, an EKG and other tests were done that were sent to the U of MN in Minneapolis,MN. They immediately decided to life flight her to the U of M for surgery. Upon arrival baby Mimi coded. She was then diagnosed with Tetralogy of Fallot with Pulmonary Atresia. She had an emergency shunt put in on May 2nd, 2009.

When she gets older and stronger in about 4 to 5 months, she will need another surgery to repair her ventricle wall hole and her aorta. It is a miracle that she lived for 3 weeks of her life on such low oxygen levels and continued to thrive! We are grateful for friends telling us that she looked "dusky" and for our home town pediatrician to send us to the cardiologist. She is a true fighter in our eyes. I don't think my sister realizes the financial devastation that this will cause to her and her family! Katie and Derrick are in their early 20's and finishing up with college. They both have jobs and have Blue Cross and Blue Shield insurance, but I am sure there will be additional medical costs that they cannot afford and would appreciate any help they could get! We have limited resources here and were checking out options on the internet when we found out ! about "Cooper's Cause" and we would appreciate any help that you can g ive my sister and her family! Thank you for listening to our story!

Shannon Wendorff

PORTER'S STORY

My name is Tyler Boyles and my wife's name is Jenna. On July 6 2009 we gave birth to our second son Porter Lee Beckham Boyles he was 6 lbs 12ozs. We had an over night stay and everything seemed textbook. After a week or so of being home we noticed our little man wasn't eating well. We discussed it on his one week apointment with our family doctor and his tongue was clipped in hopes of improving his eating. Another week later and still not eating well we returned with him for a weight check. The doctor heard a slight murmor and assured us it was nothing to be alarmed about but schueduled a appointment for an echo to be done at OU Childrens Hospital in Oklahoma City.

On July 29,2009 we went in for a "routine" echo. Two hours later we had 4 pediatric cardiologist's standing by our bed to give us the results. They told us that our son had a hypoplastic left ventricle with pulmonary atresia. They told us to prepare for open heart surgery within the next couple days. My wife and I held each other close and kissed our little man. We were admitted to the hospital and tons of tests were performed. He was placed on several meds and antibiotics. He was diagnosed with Heterotaxy Syndrome, asplenia, malrotated bowel and other vascular problems. Several of our friends and family placed him on many churches prayer lists and we prayed nightly for his healing.

July 31 a heart cath was done and we got our first bit of good news. Porter's body had compensated for not having a pulmonary artery had had several "branches" which are support his lungs and supplying his body. Monday, August 3rd they did an upper gi test and confirmed he had a mal rotated bowel. The decision was made to not operate unless an obstruction occurs. We took that as good news as well.

August 6 we got to take our little man home and support his new NG tube which we are supplementing him through. The docs are letting him grow as much as possible before our first open heart surgery which they plan to do between 3 to 6 months of age. We are new to this and can already feel the strain of the situation. We don't care what it costs, we will do whatever it takes to fix our little soldier. We have another son Parker Kade who is 3 1/2. We explained to Parker that Porter is like Humpty Dumpty (has all the pieces and were trying to put him back together again now) to ease with visiting his bubba in the hospital. The nickname has kinda stuck.

I'm a firefighter and my wife is a kindergarten teacher. Any info you could send us would be much appreciated and thanks for creating this site. Its nice to know other people have been in your shoes and walked that long road that we are facing.

Thank you and God Bless,
Tyler Boyles

BEE'S STORY

We are just beginning a long and emotional journey. I am 27 weeks pregnant with our second child, a little girl. After our routine ultrasound in July, we were referred to a perinatalogist in order to discover the nature of an extra cavity next to the baby’s heart. Over the last month, we have visited the perinatalogists and a pediatric cardiologist at Children's Mercy Hospital in order to learn that our unborn daughter suffers from a dysplastic or rudimentary pulmonary valve. The leaking valve has caused the pulmonary artery to swell to over 22 mm. She is due in November, and we know that she will spend a great deal of time in the NICU. She will be faced with surgery sometime within the first 6 months of life to correct the valve and repair the aneurysm. The timing all depends upon her condition at birth. She will require cardiac care throughout her entire life.

Along with this heart defect, our daughter has also been diagnosed with 22q deletion syndrome, where a portion of one copy of chromosome 22 is missing. This syndrome is accompanied by many potential problems, including feeding difficulties, autoimmune disorders, cleft palate, heart defects, kidney defects, learning disabilities and many others.

Our son, a kindergartner this year, knows that his little sister is sick, but not how sick. We hope that he will be able to cope with the attention and extra care that she will be getting.

My husband is a teacher, and I work as a data entry operator for a small Eudora business. We know that despite our insurance, we will be faced with sizable medical bills. Considering the care our baby will need, I may not be able to return to work for some time. I'm grateful that my employer is a strong believer in health and family coming first, so I will be able to work from home part of the time.

I heard about this organization while listening to the LAZR on the way home from work yesterday afternoon. I don’t normally listen to commercial spots, but I'm glad I did this time.

Elizabeth (Bee) Love

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SARAH'S STORY

When my daughter was a baby I was told that she had a hole in her heart, but that it was small and nothing to worry about. Well, when she turned 18 she became pregnant and the OBGYN didn't like the sound of her heart and her frist echo was performed. She was then placed on a high risk pregnancy and tests were ran and we found out that her little girl had holes in her heart as well. SHE WAS BORN AND NOT SENT HOME WITH ANY MONITOR. SHE WAS 5 DAYS AWAY FROM MEETING WITH A DOCTOR THAT WAS TO DO SURGURY WHEN SHE PASSED AWAY! But in return for what happened to my grandaughter, MY DAUGHTER'S LIFE WAS SAVED!!!