Every year, 100,000 babies don't make it to their first birthday because of CHD.
congenital heart disease

Today’s CHD Awareness Week post is dedicated to a very special Heart Angel – Lawson Ryan Fien.  Lawson made his way into the world on October 29th, 2014.  Despite his heart condition, he was a fierce warrior, spreading immeasurable love and joy in his just six months of life.  To understand the impact Lawson made on the world, it is important to know his story:

He was diagnosed with hypoplastic left heart syndrome (HLHS) at his 20-week ultrasound.  At just six days old, Lawson underwent the first surgery (Norwood) in a series of three to repair his perfectly imperfect heart.  The surgery was a success, and with a few ups and downs, he got to go home after spending 37 days in the hospital.  Lawson was wheeled into his second open-heart surgery (Glenn) on April 29th, 2015.  The surgery went well, but at a routine exam, doctors noticed that Lawson’s pupils were uneven and it immediately became a major concern.  He was rushed back for an emergency CT where it was discovered that he had suffered a massive stroke, severely damaging two-thirds of his brain and the swelling was rapidly increasing the damage.  It was determined there was no intervention that could repair, reverse or prevent further damage.  At 4:32pm on April 30th, 2015, Lawson went to be with the Lord and heaven gained another angel.

love for lawson

Remembering Lawson

Although the pain the Fien family has endured in Lawson’s absence is unimaginable, they have found the strength to honor their son and brother in their everyday lives.  His parent’s Meghan and Ryan describe him as sweet, strong, brave, inspiring and heaven-sent.  They say:

Our Lawson is our precious angel and forever our littlest shining light.  Our hearts are forever broken without him here in our arms.  We miss him every second of every day and our love knows no boundaries for him.  He was our best little friend and gave our family the most precious six months we could have ever asked for.  To heaven and back a million times our sweet baby.  All our love, all our life.

Lawson’s eleven-year old brother, Dylan, describes him as cute, amazing, awesome and funny.  He said he was very sad when Lawson was diagnosed with a CHD and that he had to spend so much time in the hospital as a result.  When he met Lawson for the first time he was already one month old, Dylan describes it as the best day of his life and that it is his favorite memory with him.  The hardest part about losing his brother was remembering all the good times they had together and if he could tell Lawson one thing, he would say, “I love you.”  Dylan says he is honored to be a sibling to a Heart Warrior and he is so proud of Lawson for how hard he fought through everything.

When Lawson’s nine year-old brother, Gavin, was asked to describe him, he said he was brave, loving, cute, amazing and a warrior.  Gavin remembers when Lawson was diagnosed with CHD, saying, “My Mom told me and when she said what he would go through it made me sad, but I knew God was on his side.”  He says meeting Lawson for the first time was special because it was tough not seeing him or his parents for a long time, but it was worth the wait.  His favorite memory with his brother was going to Arizona with him and they loved playing together.  If he could tell Lawson one thing, he would say, “You are always our baby and you are in a better place.  You were a great brother for the six months and one day you were with us.

congenital heart disease awareness

Lawson’s oldest brother, Colton (18-years old), describes Lawson as strong, adorable, brave and optimistic.  Colton says he was shocked when he heard of his brother’s diagnosis, he didn’t think something like that could happen to someone close to him.  While Lawson was in the hospital, Colton felt both stressed and relieved; stressed because he didn’t always know what was going on with his brother, but relieved to know he was in good hands with the doctors at Children’s Hospital.  Colton says the following about meeting Lawson for the first time, “It was a surprise! I didn’t know my parents would be home, and when I got home after school they were home with Lawson!  He was so peaceful and sweet.”  He says his favorite thing to do with Lawson was to lay on the ground with him, to just watch him look around and have Lawson look up at him.  His favorite memories with his brother include the first time meeting him, going to baseball games with him, and just holding him.  The hardest part about losing Lawson for him was feeling hopeless.  As the biggest brother, he felt there was nothing he could do.  It was hard for him to feel powerless against it.  If he could tell Lawson one thing he was say, “I love you and I miss you, little buddy.  Thank you for keeping an eye on me.”  Colton says his little brother inspires him to strive for greatness.  He knows that Lawson is watching over him, and with his brother guarding him from heaven, he feels like he can do anything.  Colton describes his journey through everything, saying:

My time with Lawson was amazing.  He was such a big ball of joy in a world of sadness and pain.  Losing him has left a huge hole in my life that hurts me every single day.  Everything I do is because he is helping me from above.  He’s my guardian angel.

On June 4th, 2016, Lawson became an older brother when Nixon Jeremiah Fien was born, healthy and happy.  Their Mom, Meghan, says she knows their sweet angel, Lawson, handpicked him in heaven just for them.

The Matthias Parke Maloof Scholarship Fund

matthias parke maloof scholarship fund

When tragedy strikes in a CHD Family, siblings often bear the brunt of the family crisis.  They are the ones getting woken up at odd hours, getting left with family members, babysitters or they themselves have to be the ones in charge.  They step up when needed and most times do not even grasp the importance of their role.  Through everything, they hurt and ache just as much while often taking on the burden for the whole family.  When Heart Warriors come into the world their siblings must take on a role they didn’t ask for, but they do it because they love and support their brother or sister unconditionally.  They play a crucial role in keeping the family together in times of crisis and uncertainty.

Matthias Parke Maloof was born on August 28th, 2016 and immediately left us to be with God in heaven.  Although he never got to meet his brothers, Matthias will always be a sibling to his Heart Warrior brother, Remington.  To honor his life, his parents started the Matthias Parke Maloof Scholarship Fund with their family friends, Ryan and Tasha Wines.  It recognizes the strength and never-ending support of siblings to Heart Warriors and the many sacrifices they make for their families.  This scholarship will serve to honor siblings who represent love of family, unity, strength, courage, resilience, perseverance, sacrifice, honor and hope.

Earlier this month at our second annual Gala, Save the Heartbeat had the absolute honor of making Colton, Dylan, Gavin and Nixon the first ever recipients of the Matthias Parke Maloof Scholarship Fund.  Save the Heartbeat and the entire CHD community thinks about and prays for these boys all the time.  Those of us with siblings cannot even imagine what these brothers have gone through.  While there is nothing that can be said or done to take the pain away, we want to recognize the sacrifices they have made and the courageous way in which they have handled themselves in the face of unimaginable pain.  Our hope for this scholarship is that we can ease the burden ever so slightly as their family continues to heal.

save the heartbeat

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