Meet Levi – HLHS Heart Warrior

Hi, my name is Lindsey and I’m a heart Mom to our beautiful little heart warrior Levi.

Our heart journey began on December 27th, 2017 when our son Levi was born. He was diagnosed with hypoplastic left heart syndrome in utero around 25 weeks. Hypoplastic left heart syndrome is when the left side of the heart doesn’t fully develop. It requires 3 open heart surgeries- one within the first few weeks of birth, 4-6 months of age, and another one between ages 2-3. These are all just palliative surgeries until a heart transplant is needed.

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Levi had his first surgery called the Norwood at 6 days old. The surgery went well and lasted around 8 hours. Everything was going better than the doctors had anticipated after surgery. About 10 hours after surgery, Levi went into cardiac arrest and he was put back on the bypass machine (ecmo) so his heart could rest. He was arresting for about 40 minutes before they were able to get ecmo started. They ran many neurology tests for several days after and he showed no signs of neurological damage.

He was on ecmo for 2 days and then he successfully came off without a problem. There were many highs and lows throughout our hospital stay and by the grace of God on February 2nd, 2018 we were discharged. The doctors and staff at the hospital were amazed at the progress he has made in only 5 weeks.

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We continue to see doctors weekly and Levi’s next surgery is set for May. Nobody can prepare you for the roller coaster ride of having a child with a congenital heart defect but they are worth every stress and every tear. Levi has gone through more in his 3 months of life than many people go through their entire lives.

He has proven to be a fighter and may only be 3 months old but he is an inspiration to many.

You can help Remington’s Heart reach their goal by donating below.

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(Story & photos submitted by Heart Mom Lindsey)


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