Owen Simmons - Hypoplastic Left Heart (HLHS), Pre-Transplant

Owen was born on January 28, 2008 with a severe heart defect, Hypoplastic Left Heart Syndrome. The left side of his heart was underdeveloped and without corrective surgery shortly after his birth... he would die. The corrective surgery is performed in three stages... the Norwood (birth) , the Glenn (3-9mo) and the Fontan (2-4yrs). On Owen's one week birthday, he underwent his first open heart surgery, the Norwood. There are no words to describe the heartache of sending our newborn son to the operating room, not knowing if we'd ever hold him again. We paced the waiting room at Phoenix Children's Hospital for 7 LONG hours waiting to hear that he was okay.

Owen recovered quickly from his first surgery. He was considered "FRAGILE", but after spending his first 30 days in ICU, he came home with seven medications and an NG tube for feeding.
We took him in for a heart catherization the last week of March 2008 to find that he was in heart failure. His heart function was decreasing, his tricuspid valve was moderatly leaking and his heart was working overtime. Owen was admitted to ICU and placed on Milrinone to strengthen his heart and prepare him for his second open heart surgery, the Glenn. One week later, we felt he was ready and he went back for surgery two. We were scared breathless when the doctors didn't know if he'd make it out of this surgery. He was weak, his oxygen saturations were low and he had a hard time coming out of the OR. His sternum and skin were left open again, this time in case they had to get in an emergency. Thankfully, he had a major turnaround during those first 24 hours and was on his way to recovery.
Owen spent another 30 days in ICU until he was ready to come home.Owen remained in a "fragile" state after his Glenn. His tricuspid valve regurgitation is still moderatly leaky and he has some narrowing in his arteries due to built up scar tissue. On June 4th, he was back in ICU for another cardiac catherization to balloon open his narrowings and coil off excess collaterals. This helped for a while, but he was back in ICU on October 15th for more coiling of collaterals and balloning of his arteries. During this 6 hour procedure, they determined his heart continues to fail. His function is decreasing, his tricuspid valve is leaking more and his pressures are high. His surgeon sat us down and explained there is nothing more they can do for Owen's heart.Owen will need a heart transplant! Nothing could have prepared us for our next journey ahead. Arizona doesn't have a pediatric heart transplant facility, so we would need to research and relocate.
We visited UCLA in December and Owen had his first transplant evaluation. We sat back and waited for all the test results to come back. It was a LONG four weeks of waiting.
The news wasn't good. Owen has extremely sensitized antibodies built up against many common antigens. This will make it very difficult to find him a heart, and he is considered high risk for rejection. In January 2009, we started pre-treating Owen's antibodies with IVIG (immunoglobulin) and Rituximab (chemotherapy). He was hospitalized on four separate occasions to receive his treatments. After four weeks of treatment... we drew his labs once again, and waited.
Once again, we waited four long weeks to get the details of his antibody results. All of the treatments failed. Owen's antibodies didn't budge. Since Owen is now considered high risk and did not respond to his first treatment, we've decided to look at other transplant centers that have experience and knowledge in working with antibodies in transplant patients.I called every pediatric transplant center in the nation and spoke with their transplant teams. Of all the wonderful hospitals to choose from, we chose Lucile Packard Children's at Stanford as Owen's transplant hospital.
Owen is currently being treated for heart failure. He is fed 100% by tube, he is on 7 medications, 1/2 liter of oxygen and he tires easily. Owen has PT, OT, Speech and Feeding Therapy weekly and is catching up in all areas of development. We visit our local cardiologist every four weeks and travel to Stanford every six months. Owen is monitored very closely and when the transplant team at Stanford feels it is time, we will get him listed for his new, perfect heart!We PRAY everyday that Owen will be taken care of. That his smile will continue to brighten our lives. We want to watch him grow up, go to school, find his talents and passions in life. His spirit can light up a room, his laughter is contagious and his smile brings HOPE to everyone he passes. He is OUR miracle and a JOY in our lives.

Welcome to Family Heart Book! 

About the Family Heart Book...

Family Heart Book was designed to give support to all the families that have had a child born with a Congenital Heart Defect.  Having a child go through major heart surgery among other complications really takes a toll on your family and it's so important to have support as well as an idea of what's to come, etc.  As many of you know the best support are the ones who've been there and who know exactly what you are going through, and the Heart Families are the best--there's no doubt about it!!  Hopefully this book will give you that!

This site was developed to share our Heart Babies with each other and we are hoping that you would like to be a part of it!  Our goal is to get as many families involved and produce a book that will not only be a keepsake for you, but to also give strength & hope to the new families enduring this amazing yet very stressful time in their lives.  This book will feature your childs journey through your eyes.  It will include pictures of each child & their families as well as honor those doctors, nurses & hospitals that we spent most, if not all of our time when they were born, in one of my favorite sections, Heart Heroes.  For the new families that are to come, we will be producing a new book each year so that we can be sure to have every one included! 

If you are interested in being a part of our book, please contact Ashley Majorek at familyheartbook@yahoo.com  to get all the details. I look forward to hearing from you!!