When your heart is broken: Seven Hearts Series

Welcome to the second day of Seven Hearts in Seven Days - if you are looking for more information on Congenital Heart Defects or how to get in on the giveaway - check out  Saturday's post.

Today's post is from the Simmons Family

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 (2-3yrs).

On Owen's one week birthday, he underwent his first open heart surgery. There are no words to describe the heartache of sending your newborn son to the operating room, not knowing if you'll ever hold him again. We paced the waiting room 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!!

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 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 again.

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 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. The 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 seperate occasions to receive his treatments. After four weeks of treatment... we drew his labs.

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. Most of them don't treat antibody issues. If the perfect heart doesn't come, they will only treat his heart failure. There were four transplant facilities that stood out among the rest and we are currently waiting on evaluations. Meanwhile, Owen is 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. If he shows any outward signs of further failure (sweating, puking, weakness, breathing difficulties,ect) he will be admitted and given an IV drug, Milrinone, until her perfect heart comes.

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.
For more on Owen, visit http://owensheart.com/