EASTON'S STORY
NICU
Easton Richard started fighting before he even entered this world. Thirty-six hours after being induced, Easton still would not come and had to be delivered via c-section on December 11, 2019 at 5:33 am. He was not breathing and was born with a very large hernia. His ultrasounds from the past week had shown an enlarged heart as well. Easton was immediately rushed to another hospital with a NICU that was better prepared to take care of his needs. The EMTs said he was trying to rip tubes off his face in the ambulance. He was intubated shortly after arrival and this is when doctors also suspected that he had a connective tissue disorder and began genetic testing. Connective tissue is like the glue the holds your body together so connective tissue disorders effect all the systems in your body.
Easton made a lot of progress very quickly while in the NICU and transitioned from being intubated to just needing a small amount of oxygen. He had his first surgery to fix his hernia at 2 1/2 weeks. Doctors said he would probably come back from the surgery sleepy and would not want to eat for awhile. Not Easton! He came back into the room screaming and wanted to eat immediately. Easton's genetic tests came back and he was diagnosed with Neonatal Marfan Syndrome, the most severe end of the Marfan Syndrome spectrum. Easton's heart was in bad shape and he was started on medication immediately. He would need a very risky heart surgery. Doctors were hoping he could make it to 1 year before getting the surgery. After spending 23 days in the NICU Easton finally came home.
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Back In The Hospital
After spending about a week at home and getting to meet some of his family, Easton ended up back in the hospital. He went in for a pulmonologist appointment and the doctors discovered that his oxygen numbers were bouncing all over the place and at times were extremely low. He stayed in the hospital for a little over a week without many answers as to what had happened. He came back home, and although he had numerous doctors appointments every week and was still on oxygen, he got to be a normal baby for about a month.
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In the Hospital Again
Just after Easton turned 2 months old, on February 18, 2020 he entered the hospital for the last time. Easton was not eating well, and was obviously in a lot of pain when he did try to eat. He was admitted to the hospital for dehydration and failure to thrive since he was so underweight. It was discovered that he had severe reflux and even after being put on medicine, the reflux was still not completely better, so it looked like Easton was going to need a g-tube put in for feeding as well as a surgery called the Nissan procedure to help tighten the muscles around his stomach. While in the hospital and gaining weight, doctors were also working on Easton's breathing problems which were not getting better as expected. After being in the hospital for a little over a week, Easton started crying one night and couldn't catch his breath. He stopped breathing and went into cardiac arrest. CPR was done, and Easton was moved to the ICU. It was decided that his breathing issues were worse than initially thought. He would need to have more intensive breathing treatments including wearing a cpap mask full time as well as many tests to try and determine the problem. In order to tolerate the masks, Easton was placed on mild sedatives. He also had a PIC line put it to make his daily blood draws easier. After a few weeks, Easton's breathing was still not improving as doctor's thought it would, despite gaining weight and growing. Easton was diagnosed with mylasia which means that his airways are floppy and close in on themselves. The decision was made that he would need a tracheostomy. Trach surgery and heart surgery have to be scheduled a minimum of 6 weeks apart, so before his trach surgery could be done, doctors had to make sure he would not need a heart surgery for six weeks. Up until this point, Easton's heart had been holding steady, so this looked highly likely. However, for the first time, his echo showed that his hear was getting worse, and the doctors needed to do more tests. While waiting on those tests Easton's breathing continued to decline, and he eventually needed to be intubated. It was also decided that Easton could not wait 6 weeks for heart surgery and that he would need heart surgery before trach surgery. He had just turned 3 months old the week before.
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Heart Surgery
Easton's heart surgery was very risky, both because of his age and because of his Marfan Syndrome. The initial plan was to try and "tighten up" his leaky mitral valve and tricuspid valve. If the surgeon did not think he would be able fix his mitral valve, the valve would need to be replaced with a mechanical valve, which would mean Easton would have to be on blood thinners, which as you will see, presents a bunch of other issues. The initial part of the surgery went well. Easton was put on bypass and his mitral and tricuspid valves were fixed. He was taken off bypass and that is when the surgeon found out that his aortic valve was not functioning properly. He had to be put on bypass again so the surgeon could attempt to fix his aortic valve as well as replace part of his enlarged aorta itself. Easton's aortic valve was so abnormal, the surgeon was not able to fix it, and he had to put in a mechanical aortic valve. After being in surgery all day, including stopping and restarting his heart twice, Easton came out of surgery on ECMO, which is a machine that basically works for your heart and lungs. Easton's chest remained open because of swelling and he had several drainage tubes as well as pacemaker wires. The hope was that as Easton's heart muscle recovered from the surgery, it would slowly start to do the work and he could be weaned off ECMO. However because of the mechanical valve he needed to be placed on blood thinners or the valve would clot shut. This is an issue when you are trying to stop the bleeding from a surgery. Over the next week Easton fought and the right side of his heart started to work as hoped. However, he eventually needed another procedure to clean out his chest, as he was bleeding too much but the blood thinners could not be stopped. Additionally his lungs filled with fluid and were not able to do any breathing on their own. The ECMO machine was oxygenating his blood. Miraculously, one day after trying several different treatments his lungs started to recover. Within a few days his lungs were clear and working, completely mystifying the doctors! However he still needed a breathing tube due to his mylasia. Unfortunately his heart was not recovering. His aortic valve appeared to be clotted shut. The doctors informed us of the devastating news that they did not think Easton would survive another surgery to try and remove the clot. He also would not survive without the surgery. The decision was made to do the surgery. Easton survived! In addition to removing the clots on his aortic valve, he also had to have surgery on his coronary artery.
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Saying Goodbye
Although Easton survived his second surgery, after a few days, his heart was showing no signs of improving function. Additionally his kidneys, among other things were struggling from being on ECMO for so long. After being in the hospital for over 6 weeks, the doctors informed us that there was nothing else they could do for Easton and that if his heart was going to start working, it would have done so already. Easton would not give up, but he was suffering, so his parents made the decision for him. On his 4 month birthday, April 11, 2020, the ECMO was turned off and Easton was finally able to rest in peace.
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Our Superhero
Easton was a superhero who started fighting before he ever entered this world. His bravery and strength and will to keep going inspired everyone around him. He was also a charmer, and people instantly fell in love with his his huge personality and big brown eyes. He endured more in his short life than most people do in 70 years. He had 100s of xrays, echos, and ultrasounds, multiple MRIs, CAT scans, swallow studies, and bronchoscopies, 3 surgeries, plus multiple bedside procedures. He had more IVs and blood draws to count. He had to be put on so much pain medicine that he eventually went into what is called ICU delerium. Through all of it, he never gave up. He was always able to communicate, even with a breathing tube in and he was very opinionated! He strength and grit will never be forgotten.
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