Owen's Story

 
Owen's Story

I will never forget the day of our 21 week ultrasound.  We had, what we thought was, a perfect 18 week ultrasound and knew we were having a baby boy.  We were told by our OB that everything was great but they wanted more pictures. We were so excited to see our little guy again and couldn't wait to see his little face in 3d.  We could have never imagined what would transpire that day.  The doctor at the Perionatologist office walked in and told us our son had a congenital heart defect, Hypoplastic Left Heart Syndrome.  We had never heard of a Congenital Heart Defect and nothing could have prepared us for that. The doctor proceeded to inform us that we had one week to decide to terminate the pregnancy.  He gave us no hope and no where to turn.  We left the office in shock, heartbroken and hopeless.

I spent the next weeks crying, searching for answers, trying to find Hope.  There were no heart groups on facebook, no local support groups, and we felt we were in this fight alone.  A few days after the initial diagnosis, and shock, I woke up and knew that I was going to do everything that I had to give our boy the best fighting chance.  I was in this 100%!

Owen was born with Hypoplastic Left Heart Syndrome, or half a heart.  Our option was a series of a three staged palliative surgery.  I suppose we had the option to take him home and pass comfortably, but that was not even considered.   We decided that moving forward with the surgeries was his fighting chance and even though he would always have only half a heart, we knew that we were giving him life.

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 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 moderately 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 was still moderately leaky and he had 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 narrowing 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 ballooning of his arteries. During this 6 hour procedure, they determined his heart continued to fail. His function was decreasing, his tricuspid valve was leaking more and his pressures were high. His surgeon sat us down and explained there was nothing more they can do for Owen's heart.

Owen needed a heart transplant! Nothing could have prepared us for our next journey ahead. Arizona didn't have a pediatric heart transplant facility, so we needed 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 had extremely sensitized antibodies built up against many common antigens. This would make it very difficult to find him a heart, and he was 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 and waited for the news.

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 was  being treated for heart failure. He was fed 100% by tube, he was on 7 medications, 1/2 liter of oxygen and he tired easily. Owen had PT, OT, Speech and Feeding Therapy weekly and was catching up in all areas of development. We visited our local cardiologist every four weeks and traveled to Stanford every six months. Owen was monitored very closely and when the transplant team at Stanford felt it was time, we planned to list him for transplant.

In December 2010, we were told that since he was doing so great, he might actually qualify for the last palliative surgery (the Fontan). Before we could decide if the Fontan is possible, Owen had to undergo a 3rd open heart surgery, performed by Dr Hanley, to fix his severely leaking Tricuspid Valve. The surgery was a success and we just needed to allow  his body time to heal.

In July, we went back to Stanford for a Cath and MRI to determine if the Fontan would be an option.  His heart function looked great and his Tricuspid Valve repair was looking great.  Owen's pressures had increased in the past year and they were too high to make the Fontan a success.  We decided to reevaluate him in six months. 

Owen was granted a wish from the Make A Wish foundation in December 2011 and we went to Disneyworld for 10 days!!!  If there is one thing that we take away from his our boy with a broken heart is this.... make each day count.  Children grow too fast, time is short and we choose to make the best of every day. 

On August 23, 2012, Owen was listed for a heart transplant at LPCH.  He was stable enough to wait at home in Phoenix for the first 10 months and asked daily when he would get his new heart!

During his wait...Owen also received a monthly IVIG infusion at Phoenix Children's monthly and in the CVICU.  None of these challenges keep him from doing the things he loves!  He has the best Sister, lots of loving cousins, aunts/uncles, Grandparents and love surrounding him.  There is no doubt that he has touched the hearts of all those that know him.

On June 11, 2013, we moved to Palo Alto, CA to live at the RMH and start Owen on Milrinone IV therapy.  At that time, he was bumped to the top of the transplant list.  After waiting almost a full year for a heart, Owen was given the greatest gift on July 17, 2013!!   Nine days after his life saving heart transplant, Owen was discharged from the hospital, oxygen free for the first time ever.

Owen is doing wonderful with his new heart, living life, starting Kindergarten and getting stronger everyday.  He goes to physical therapy to work on cardiac rehabilitation several times a week as well.  We can't wait to see what his future looks like.

We think about Owen's heart donor everyday. We are so grateful to the family that chose to give Owen the ultimate gift in their deepest moment of grief. I hope they find comfort in knowing that Owen will live life to it's fullest!

Owen will remain on anti rejection medications forever and someday his thirteen medications a day will be less. He is on high dose steroids and anti rejection medications to avoid rejection of his new heart. As of now, he has had zero cellular rejection on all of his biopsies, but we are still battling the antibodies that we knew would be a challenge from early on. The average life of a "graft" or heart transplant is about 10 years, but we pray and hope that science will catch up to Owen. He will always be at risk for rejection, increased risk for cancers, and coronary artery disease. We don't even want to think about these risks now... we want this new heart to last him a long time!

We PRAY everyday that Owen will live a good quality of life. We want to watch him grow up, go to school, find his talents and passions in life. .He is OUR miracle and a huge JOY in our lives.

This is Owen's CHD story.

Congenital Heart Defects affect 1 in every 100 babies born. Hypoplastic Left Heart is one of the most severe forms of CHD.

  Sisters-By-Heart is a non profit set up by heart moms, to offer support and encouragement to new families affected by HLHS. http://sisters-by-heart.org

If you are not, please consider registering to become an Organ Donor!! http://donatelife.net

Thank you. :)