Wednesday, February 9, 2011

Landon's Story

In hopes to spread more awareness of Congenital Heart Defects, I have asked friends of mine if they wouldn't mind sharing their stories. On Monday, Amy shared Bodie's story, an almost 1-year-old heart warrior, who has HLHS. Today, I asked my friend Bekah to share hers. Bekah is another good friend of mine. We also meet on a mommy forum when we were both pregnant with our first. We have known each other for over four years now. I remember the day Bekah told us she was expecting their second child, and was just overjoyed with happiness for her and her family. As her pregnancy progressed, a routine ultrasound was performed, and at 27 weeks pregnant their world would be changed forever.

Landon's Story
by Bekah

The first hint of trouble came when I was 27 weeks pregnant. During a routine ultrasound, LJ heart was beating irregularly. Further monitoring confirmed that his heart was not beating correctly. I met with a perinatologist a couple weeks later when it was revealed that the right side of LJ's heart was enlarged but nothing further could be determined because of his positioning. A week later there it was....Ebstein's anomaly. "It's real and it is there." were the words of the Dr. It was revealed that I couldn't have LJ in my hometown as it was not equipped with pediatric cardiac care. I would have to deliver in St. Louis, MO (thank goodness that is where my parents and my inlaws live). A couple weeks later I went into preterm labor and was rushed to St Louis where labor was stopped but we were hit with another diagnosis...LJ had pulmonary stenosis. To make it a bit shorter, Ebstein's is when the tricuspid valve (found between the right atrium and ventrical) forms too low causing the ventricle to be small and the atrium to be large and the valve itself can be leaky or too tight. LJ's is leaky. Pulmonary stenosis is the tightening of the pulmonary valve (the valve between the right ventricle and the lungs.
Therefore blood was trying to leave the right atrium but was being sucked back in at the same time blood was trying to get his lungs but the valve wasn't big enough to allow it. The pressure in LJ's right side of his heart were dangerously high. Typically the younger this condition is diagnosed, the more severe the case. Typically when diagnosed prenatally there is very little chance of the baby making it to delivery and if they make it that far, there is even a smaller chance that the baby survives until the first year.

LJ was born on April 3, 2009, 4 weeks early, weighing one ounce shy of 8 lbs and only 19 inches long. He was whisked away. After a few days he went into for his first procedure. Through a catheter in his thigh, they inserted a balloon into his pulmonary valve to stretch it. The next day we were told we were going home!! This was unreal as we were told to expect at least 4 weeks in the hospital. LJ was home in time for Easter. We had follow ups regularly and at 3 months old, we were told his balloon procedure had failed. His pulmonary valve had closed back up and his pressures were back up.

July 5, 2009 Landon went in for his second ballooning procedure. July 6, 2009 a team of Dr's walked into his hospital room to inform me that the procedure had already failed. Landon was going to need open heart surgery. It was just LJ and I in the room after they left. I wept.

August 7, 2009 Landon went in for his surgery 7 hours behind schedule due to an emergency double lung transplant that morning. Landon made it through surgery well. They "remodeled" his pulmonary valve and left his tricuspid valve alone for now. A week after surgery, LJ was released.

February 2010. We were told that LJ's surgery was not as successful as they hoped. His pulmonary valve was now leaking along with the tricuspid valve. Another surgery before adulthood is definite. They can't pinpoint when but the words "he will just get really sick and you will know it is time..." is what I can remember clear as day. His next surgeries will be to replace with valves which will require repeated surgeries through out his life to maintain their function. Due to the enlargement on the right side of his heart, there is a chance LJ will need a pacemaker as the enlarged tissue can cause misfiring of the heart. It is hard to say just how many surgeries and procedures are ahead.

When expecting a baby, the last thing you ever think you will hear is that something is wrong with them. And to hear that it is your baby's heart that is broken is devastating. Landon is growing and thriving. Some even comment that you wouldn't even know that he is sick. There is no cure for CHD. There is no fixing it. These kiddos will also live with an imperfect heart. BUT, I can't imagine this world without Landon or the thousands of others going through what he has. He has definitely brought me to a completely different place in life and I know he has touched more people than I will ever realize.
Landon today

I also wanted to add, Bekah just recently graduated with a PhD in Chemistry. How amazing is that!? I don't know too many people who have taken care of a husband, toddler and a heart warrior while trying to finish their PhD. You go girl!


  1. I can't thank you enough, Leyna! Thanks for posting LJ's story. Going through it all, I just kept reminding myself that LJ was the one living with the CHD, not me. He definitely kept me motivated to achieve any goals I had set in front of me.

  2. Wow Leyna, thanks so much for sharing LJ's story! Bekah, I knew LJ's diagnosis, but didn't realize exactly how tough his start was or how uncertain his future is, in terms of surgeries, possible pacemaker, etc. He is SUCH a little miracle. And you are an amazing heart mama! Heart hugs to you both!!!