Gore, VA

The Brown Family

Cooper Brown
Congenital Lymphatic Malformation with Reoccuring Life Threatening Infections

On January 30th, 2020, our 14 year old son, Cooper, was admitted to the hospital with an unknown infection in his leg.  He was having pain, difficulty walking and pressure in his leg.  We initially thought we would go the Emergency department and treatment would be provided and he would be discharged, as we didn't know the extent of his illness.  Within 45 minutes of arriving to the emergency department, Cooper was being admitted and we were consulting with pediatricians, hospitalists and surgeons.  The next three days were filled with tests, intravenous antibiotics and constant consultation with surgeons.  The belief, at that time, was that Cooper had a severe infection in his leg.  After three days of intravenous antibiotics, the surgeons felt it necessary to open his leg and clean out the infection.  When surgery was finished, we were presented with new findings.  The surgeons found a cyctic mass inside Cooper's leg.  The surgeon had never seen this type of mass before and was unsure as to it's origin or necessary treament.  Biopsies were performed and sent for pathology.  As his parents, we were presented with the we don't know and as soon as we do, we will let you know.  Cooper spent the next few days recooperating from surgery and receiving more intravenous antibiotics.  As his leg began to heal, with the about fifteen staples and six stitches, closing the nine inch wound on his leg, we prepared for discharge home.  Due to the nature of the inflammation in his leg, he was discharged home with a PICC line and receiving heavy duty intravenous antibiotics, around the clock at home.  Cooper did very well, initially; however a few  days later developed a fever and malaise.  He was very fatigued, feverish and in general felt really horrible.  We took him to the emergency department again, where he fainted  in the triage area.  I have never seen him look worse.  As he was assessed over the next eight hours, it was believed that he may have a blood infection from the PICC line.  They removed the line, started regular IV antibiotics and admitted him to the pediatric floor.  Over the next few days, cultures were performed; however a specific type of infection was never isolated.  Consulting with the surgeons, one surgeon believed that Cooper's issue was lymphatic in nature.  He ordered an MRI, and promised that he would get to bottom of the issue.  The following day, Cooper was diagnosed with  Lymphatic Malformation.  This is a congenital issue, developing inutero, that often goes undetected.  At puberty, hormones may cause this type of inflammation to grow and expand, as well as become susceptible to serious infections.  Plans were made to consult with the medical team, at a critical care children's hospital.  With improvement, Cooper was again released home.   A few days later, we were in the clinic at the children's hospital.  Cooper had improved immensely in those few days, with his leg looking great, at this point.  We developed a tentative plan to continue to allow his leg to heal and monitor the progress, with plans to address the issue in six months.  Cooper spent the next few days recovering at home.  It was a Friday morning, when I discovered Cooper's leg, once again, inflammed and Cooper feeling very sick.  He had a fever, was fatigued and very ill.  Cooper was direct admitted to the pediatric floor of our local hospital.  Immediate upon arrival, plans were made for a second surgery and heavy duty IV antibiotics were started.  Cooper went through the second surgery to clean out his leg and came out to begin Wound Vac therapy.  A negative pressure vaccum attached to his leg and a pump that maintains this pressure.  Two days following surgery, Cooper was prepped for his first wound vac dressing change, which was extremely painful.  Cultures of his wound were done at this time; however Cooper continued to improve.  Plans were being made for him to be discharged home, the following day.  The same evening as his first wound change, Cooper's health started to decline.  He began to run a fever, became fatigued, pale and incredibly ill.  He was monitored throughout the night and plans were made the next morning to transfer Cooper, via ambulance, to the children's critical care hospital.  It was discovered that he had two very serious infections, in his leg.  And as we have since learned, he had developed sepsis.  During the ambulance transfer, Cooper was tachycardic throughout.  Upon arrival to the hospital, he remained tachycardic, with his blood pressure also declining.  He was heavily monitored throughout that night.  Consultations took place the next morning with both surgery and infectious disease specialists.  Mutliple IV antibiotics were started and plans for a third surgery were made.  Two days later, Cooper went to surgery, again.  He did extremely well.  Cooper was to remain on the IV antibiotics and Wound Vac therapy.  After a total of seven days in the critical care hospital, Cooper was finally able to come home.  He would have the Wound Vac attached, for the foreseeable future and was to be monitored very closely, from this point forward.  Three days after arriving home, the national call to close public places, due to COVID happened.  We were faced with eight weeks of Wound Vac therapy, in and out of a hospital facility, at the height of a national pandemic.  To say, we were scared as parents, is an understatement.  

Throughout all of the hospital stays, health difficulties, surgeries and scares, Cooper remained strong.  He showed a resilience that most parents could only hope to see from their children, let alone a fourteen year old.  During his stay at the critical care hospital, Cooper was supposed to be on a class trip to Guatemala.  One he worked an entire year to fund.  He handled this disappointment so gracefully, despite the great disappointment that he felt.  Cooper contined to improve, during the next few weeks.  He developed another infection, during his wound vac therapy; however thanks to our quick action, we were  able to get jump on it and start antibiotics quickly.  This saved him from another hospital stay.

On May 8th, Cooper was discharged from Wound Vac therapy.  Two months after being discharged from the critical care hospital and over three months, from first emergency room visit.  He lost three months of 2020, due to his illness.  The plan was in place for Cooper to consult with specialists at the critical care hospital, at the six month mark, being in August 2020.  Cooper did very well, as he continued to recover.  

We recently had the six month appointment, where we explored future options, as Cooper is still at significant risk for dangerous infections.  He has a lot of fear and apprehension, because this could arise quickly and out of nowhere.  Lymphatic Malformations lend themselves to developing infections easily and it is the primary complication that arises.  We are currently in the process of further testing, with an MRI ordered for coming days.  This MRI will give surgeons a better understanding of what type of malformation Cooper has, Macrocystic or Microcystic.  Depending on those findings, plans will be made for a further procedure or surgery.  For all of us, in our family, the thought of more surgery or procedures is terrifying.  We have seen our son go through hell and back and we just want him to be safe and healthy.  Unfortunately that is not the hand he has been dealt, this year.  We will continue to be by his side, as I never left him, during his four hospital stays.  In this, I, his mother, lost over six weeks of wages.  Cooper's dad lost multiple weeks of work, as well.  We had to call upon family members to help care for his four year old sister.  In general, our family had never faced a crisis, such as this, before.  Thankfully, we financially made it through this time.  With the cost of staying at the hospital, staying two hours from home, never leaving him, our family was financially strained.  But we did it.  

Now, as we are receiving the after effects of this crisis, things have become a little more difficult.  Medical expenses piled up, lost wages were felt deeply.  We continue to attempt to be strong and handle our responsibilities, on our own.  We now realize it is time to reach out to our community, for help.  Our family doesn't need a mountain of help, just enough to ease the financial strain that has followed our child's medical crisis.  No parent should have to worry about staying with their child during their time of need.  I never once thought of leaving him.  Now, we have to spend the next few years battling the after effects of this crisis, including the perspective future treatments, surgeries and procedures.  

We are so appreciative, as a family, for the support and love that we have felt throughout this year.  We hope you will consider helping us with this financial strain and allowing us to move into the next chapter of Cooper's life, not focused on affording whatever his medical situation brings.

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