Stand by Mason: A Twin's Journey

In December our family changed forever.

After giving birth to healthy twin boys, Miles came down with what we thought was a simple cold. Two days later, Mason began to come down with the same thing. While their congestion worsened, neither had a fever. On 12/22 my babies ate and fell asleep on schedule, but when I woke in the morning to silence I knew there was a problem.

Miles was unresponsive with blue lips, Mason was awake but struggling. Both boys were brought to the ER on 12/23 and that’s when god took back my Angel to do his work and guard his brother Mason on his journey.

While I was saying goodbye to Miles I was told Mason was crying and doing well and was being admitted to the ICU. Not long after that he needed to be intubated and placed on a ventilator. By the time we got upstairs to be by his side we were rushed out. Mason had gone into cardiac arrest and needed 7 minutes of cpr to be brought back to life.

Mason very was already in septic shock and suffering from multi system organ failure. We were told the next day that he wouldn’t make it through the night. We prayed and prayed, and I know with Miles watching over his brother, a miracle, one of many to come, was performed. Mason’s organ failure began to reverse. But his journey didn’t end there.

Not breathing for 7 minutes prevents oxygen from reaching the brain, and Mason’s brain suffered. While he wasn’t stable enough to assess the damage, an EEG did confirm the damaged areas were causing him to have seizures, lengthy and often. He was given medication to calm his brain waves in an attempt to prevent further seizures, and hopefully further damage. With increase after increase, Mason’s brain continued to seize and again we were given ‘the talk’ Their last ditch effort was to place him in a medically induced coma, essentially turn his brain waves off completely, and hope when the seizures stopped, they wouldn’t return. Miles helped Mason perform another miracle.

Mason was very slowly brought out of his coma when his seizures stopped. We anticipated the moment he would open his eyes and couldn’t wait for him to see his world again. However the doctors warned us that a brain injury after 7 minutes of not breathing would most likely be substantial and that we had to prepare for the likelihood that Mason would in no way be the same little boy he was on trajectory to be. We prayed and Mason fought with Miles by his side and after a lengthy medication wean our baby opened his beautiful eyes.

But his journey was nowhere close to being finished.

Our babies were found to be positive for rhinovirus.. the common cold. We were told the common cold doesn’t usually cause respiratory failure like this, so we awaited more testing. While Miles has an autopsy pending, we do know that Mason had a bacteria in his lungs known as Klebsiella Pneumonia, a combination which absolutely could cause respiratory failure, yet the doctors weren’t fully convinced. Mason would show them how wrong they were.

Even though his eyes were opened, we had no idea how extensive Mason’s brain damage would be, and were told we wouldn’t for some time due to his age, but again we were told to expect the worse. We were told he’d need to be on a ventilator for the rest of his life, yet when they attempted to excubate him, the doctors were floored.

After weeks in the ICU, in a coma, intubated, and thought to have extensive brain damage, Mason woke up ready to take on the world. At this point, he was diagnosed with hypoxic ischemic encephalopathy complicated by rhinovirus, Klebsiella pneumonia, multi system organ failure, and septic shock. He will be treated for epilepsy for the rest of his life. Yet he was strongly breathing on his own, looking around, peeing and pooping, and wanting to cry, however no sounds came out. An MRI revealed resultant brain damage in his skeletal muscular and visual areas, at which time we were told it was possible he’d have little to no vision and trouble with muscle growth and movement. He also developed stridor, which was later diagnosed as laryngomalacia, a congenital birth defect, but no treatment was ever ordered nor resolution offered for it at that time.

Very quickly Mason was deemed well enough to be moved to the general pediatric floor, out of the ICU, and granted stable status. Even more quickly, he was moved from his private room to shared room after shared room.. something we were told was a positive thing, as it appeared he was no longer contagious. We were assured that children with droplet infections weren’t placed in shared rooms and that Mason would be safe. That wasn’t the case.

At a month and a half into our journey, Mason was presenting more like a healing and happy baby. His vision was tracking, he was kicking his legs and waving his arms, and he began to smile and coo in addition to performing his famous bradeycardia trick where he threw temper tantrums resulting in drastic heart rate and oxygen drops on his monitors. His stridor however persisted. At this point we had already been roomed with 4 patients who ultimately tested positive for respiratory viruses. My cries fell on deaf ears, my concerns were not heard. My children fell violently ill from viruses just like these, and with or without the presence of the bacterial pneumonia, the last thing I wanted Mason to go through after his last fight, was another battle.

After being roomed with a child that ultimately tested positive for rhinovirus, and sharing everything with that family for 48 hours, Mason began to show symptoms. I was told over and over that it wasn’t necessary to swab for viruses as Mason had no fever. Yet Miles died, and Mason is where he is with these same symptoms, congestion and no fever. That wasn’t enough. 5 days into his symptoms, Mason began to vomit after his feeds. He tested positive, again, for rhinovirus. He was moved to a private room. 2 days later his stridor worsened and he began pulling in violently at his neck when taking breaths. Overnight, this over working to breathe continued and worsened to chest retractions. He was put back on oxygen, and no matter how much they increased the flow, his contractions not only persisted, they got worse. I asked to be sent back to the ICU and the request was granted. However while waiting for that transfer to happen, my baby, in my arms, began taking one breath for every 5 he should’ve been, and I saw his lips turn the color blue just as I had seen in Miles on 12/23.

Mason was trying to tell us something wasn’t right with him, and he showed me exactly what he and his brother went through 2 months prior and how quickly something so simple progressed. Once in the ICU, his struggle to breathe continued despite all measures to alleviate it. I knew it had to happen, and I asked how long it would be before he’d need to be back on a ventilator. While the decision was being made, in a span of 30 minutes, Mason’s temperature shot from 99.1 to 104.2. I was told viruses peak around this time but I begged for antibiotics and a blood culture. He was given Tylenol and ice packs. When that didn’t work they gave him antibiotics as a precaution, in their words, and continued on with intubation.

The next 3 hours are a blur and simultaneously the most terrifying and beautiful moments I’ve ever witnessed in my life. Mason’s blood pressure and heart rate sky rocketed, his blood work showed he was septic. VERY septic. He went back into DIC shock and multi-system organ failure. Here he was again, fighting for his life. The culprits? Rhinovirus, and a bacterial infection, this time in his blood… caused by Klebsiella pneumonia, the same bacteria found in his lungs on admission.

2 nurses turned into a team of anywhere from 7 to 12 professionals working seamlessly together to keep my baby alive. The crash cart was parked outside of his room. I sat there in shock. Why does this keep happening?

Quickly Mason’s skin began to turn. First red, then a purplish hue. He looked like he had been simultaneously burned in a house fire and bruised by a semi truck. Again, we got the talk.. he’s very sick.. we’re going to try everything.

And they did. They were able to stabilize his vitals, using towers of medications, in hopes they could give his body the time it needed to fight the infection. An MRI at this time showed us that Mason also had fluid and blood around his brain, compressing it, and would need neurosurgery quickly.

At the same time, his skin began to turn from just colored to scabbed. To oozing and bleeding.. and in some areas.. to black. A plastic surgeon was consulted to assess Mason’s future need for corrective surgery and a possible fingertip amputation when we were hit with yet more terrifying news.

Mason had developed a very rare and life threatening condition called Purpura Fulminans. He needed to be transferred to a pediatric burn center immediately. I packed up everything I had with us and we were transferred to Cornell NYP in the city.

Mason was treated amazingly by the burn team at Cornell, with wounds healing quickly and without the need for surgical intervention. On day 2 he went down to neurosurgery, had 2 sections of skull removed, and fluid drained from around his brain. His blood infection was clearing up, and once again, he began to look like Mason. He was excubated and off the ventilator and he was smiling.

Within 2 days however, his stridor began to worsen and his neck retractions more pronounced. He was scoped by ent once again and his laryngomalacia was definitely not minor as stated previously. While talks of solutions were happening, Mason began to desaturate and retract in his chest. For a third time, despite all interventions, Mason went into respiratory failure and needed to be intubated. This time, his respiratory failure was not complicated whatsoever by any viruses or bacteria.

He just underwent a procedure to open his upper airway and alleviate a lot of his laryngomalacia complications. He is off the ventilator and oxygen, breathing well, and back on his healing journey. We are still watching him closely as there is no way to tell if that’s what keeps causing him to go into respiratory failure, but we are hopeful! His cry is louder, he’s taking his bink again and his stridor is almost nonexistent.

Should Mason’s recovery trajectory continue here, he, as well as all of us, have a long healing journey ahead. Once deemed stable enough he is set to be transferred to an inpatient rehabilitation facility where he will be reassessed and guided towards new milestones based on his brain injury. When he is finally safe to discharge home, he already has a team of outpatient specialists who will need to follow him on his journey during these crucial first years of life to ensure his continued growth and success.

I have been living bedside with Mason in hospitals for almost 3 months and will continue on with him to inpatient rehab. My family has been amazing with helping to keep home life together while we support Mason fully. However being a full time support system means I have completely lost the ability to work or plan for work at this time, and as you can imagine, savings run out pretty quickly. Any donations you make will help to alleviate the financial burdens building up behind us as we move forward with Mason. These expenses include medical bills, the cost of basic needs while away from home, NYC parking fees, commuting, future commutes to specialists, and the cost of maintaining life in general. We also have yet to be able to properly mourn, and put to rest, baby Miles. Your help means that we can continue to be by baby Mason’s side so that he has the support and advocation he needs and deserves to fully recover and get back to a normal life as quickly as possible, and also give Miles the proper services he deserves.❤️

We thank everyone for their thoughts and prayers for Miles and Mason. Each one of you has given Mason and his guardian Angel Miles the energy they’ve needed to fight and perform miracles. We love you all!