Miles the Heart Warrior

Update: Today has been unimaginable and surreal. Last night going into this morning, Miles began to steadily decline. We spent the entire night at his bedside. Around 4am doctors decided that immediate surgery was necessary to try to stabilize Miles. Upon entering the operating room, Miles went into cardic arrest and required lengthy CPR to bring him back. Because of the trauma from extensive CPR, surgeons decided to abort the surgery and return him to the PCICU. It was at this time in the early morning that doctors informed us it was unlikely the damage to Miles was reversible.

He was able to be medically stabilized for us and our parents to spend some final hours with him. Becca and I were blessed with the amazing opportunity to each hold him for the first time, just before he passed this afternoon.

As you can imagine, the pain and grief our family has at this time is indescribable and shattering. We have been overwhelmed by the tremendous support from everyone during Miles' journey and fight. We are also incredibly thankful for the continued thoughts and prayers for our family.

We respectfully ask for privacy over the next few days and weeks as our family begins the healing process. Heaven gained a warrior angel today. — with Becca Burnett.
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Our adorable Heart Warrior, Miles , has arrived! Eager to prove to the world the strength of his fight Miles decided to come 3 weeks early! Becca was transferred to the Medical University of South Caroliona (MUSC) on August 5th and delivered Miles on August 6, 2019 at 12:53 am. Miles is such an adorable chunky monkey, being born at 8lbs 9oz (and remember he was 3 weeks early!).  Big brother Cameron was so excited to see his baby brother outside of mommy's belly! Miles has a long journey ahead of him but we are all rooting for him!!
     
     Becca and Joe Burnett went to their 20 week ultrasound and were told that there baby boy had a heart murmur. They were referred to maternal fetal medicine for a more in depth ultrasound of his heart, and had to wait 4 weeks before they could be seen by the specialist. This is when they learned that there baby has Hypoplastic Left Heart Syndrome (HLHS). 
     Before learning about his heart condition, Becca and Joe were thinking of potential baby names, one of which was Miles.  They then learned that Miles is Latin for “Solider/Warrior”.  Knowing that Miles is going to be a strong fighter, they decided that this was the perfect name for their little heart warrior.
     
     To better understand what is different about Miles' heart, it is helpful to know how a typical heart works.

1. In the right ventricle,  deoxygenated blood is pumped through
2. the pulmonary arteries, where it makes it way to 
3. the capillaries in the lungs to pick up oxygen.
4. Blood then travels back to the heart through the pulmonary veins and enters the left atrium.
5. Blood then goes to the LEFT VENTRICLE (which is non functioning in Miles) to be pumped
6. into the largest artery, the aorta.
7/8. Blood then travels to either up or down, to the head/upper extremities, or abdominal organs/lower extremities, into the capillaries, where it delivers oxygen to the tissues.
9/10. The now deoxygenated blood, makes its way back to the heart through veins leading to the superior or inferior vena cava.
11. Blood then enters the heart through the right atrium where is continues the get pumped through the body with each beat of the heart.



     Hypoplastic left heart syndrome (HLHS) is a rare birth defect of a baby's heart. The left side of the heart doesn't fully develop, making it smaller and weaker than normal. The left side of the heart is supposed to pump blood out to the body, delivering oxygen and nutrients to all of baby's cells. Since the left side of Miles' heart is underdeveloped, it cannot properly pump oxygen rich blood to the body. The result is oxygenated and deoxygenated blood mixing together, lowering the amount of oxygen in the blood being pumped to the body. Without surgical intervention, Miles would become an angel. The connection between the pulmonary artery and the aorta normally is closed right after birth, closing the only outlet for oxygenated blood to the body.  Babies with HLHS are given a medication to keep this connection open. Thankfully due to research and technology, Miles has a fighting chance for a semi-normal life. He will have three heart surgeries to rebuild the small aorta and reroute his heart so that oxygen can be delivered to his body. When all three surgeries are completed, deoxygenated blood from the head and body would bypass the right atrium and go directly to the lungs to become oxygenated. Blood would then return through the left atrium, be shunted to the right atrium, then to the right ventricle where it will be pumped to the body. The first surgery (Norwood) is within the first or second week of life. The second surgery (Glenn) will happen around 4-6 months. The third (Fontan) will occur around 2 years old. Sometimes, the three heart surgeries may not totally fix all heart problems or the right ventricle can tire out over time. In these cases, a child may need a heart transplant.

     After the first surgery, Miles is expected to spend 6 to 8 weeks in the hospital to recover. He will get-around-the-clock care and monitoring. He will also get medicines to help his heart and improve blood flow. During the recovery time in the hospital, the care team will teach Becca and Joe how to care for Miles at home.  Miles will be able to go home when he is feeding well, growing well, and gaining weight.

     Becca, Joe and their two year old, Cameron, live in Myrtle Beach, South Carolina.  The amazing heart program that is treating Miles is two hours away in Charleston. The purpose of this Gofundme is to help them with expenses not covered by insurance. Driving back and forth on a regular basis, meals because they wont have a kitchen, and the other incidental costs they have while also having their lives uprooted and time split. We, and they, are very appreciative of any assistance and will continue to update and let you all know new things as they happen.

Thank you, and stay strong, Miles! 
-Miles' Heart Warriors



Update:
     After Miles was born he was having a little trouble breathing so he had to get a breathing tube and be placed on a ventilator.  He is currently doing really well on the lowest ventilator settings. This means he is mostly breathing on his own, without requiring a lot of assistance from the ventilator. The goal right now is to remove the tube when he can safely breath by himself.  Right now he is breathing a little too fast to remove the tube. As of now, first surgery will happen around August 15.  We will continue to update everyone on Miles' journey! 







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