In Memory of Garrett Elder: His Blood Clot Story

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Garrett_2My son Garrett  Elder had a stomach virus in April 2008, and a strep throat two days later that was treated with a full course of antibiotics.  He developed pneumonia on day 3 and complained of leg pain during the night.  His breathing became heavy and his leg became swollen and hard. We took him to his pediatrician, who sent us to our Children’s Hospital in Louisville, KY, where a deep vein thrombosis (DVT) was diagnosed.

Garrett was 6 at the time, and prior to that, he was a perfectly normal active little boy.  They tested him for factor V Leiden, which was negative, although his clot got worse, even though he was being treated with heparin.   Three days later, the doctors flew us to Vanderbilt University Children’s Hospital in Tennessee for clot removal by a cardiologist.

The cardiologist did an echocardiogram to look for holes in his heart or any other abnormalities in his valves.  The “echo” showed clots in his heart, so Garrett was treated with TPA, a clot buster. He also had a pulmonary embolism in each lung that required him to be placed on a ventilator for a week.

He was tested for all kinds of clotting disorders, which were negative.  The only positive test result was for ANA (anti-nuclear antibody) which the doctors thought indicated an autoimmune response that was triggered by infection.  They did not know why he was clotting so much.  This was terrifying for us.

Garrett spent 4 months at Vanderbilt, and was discharged home on an injectable factor Xa inhibitor (anti-clotting medication) and warfarin.  He developed pneumonia again a year later, and began to clot again.  Fortunately, he got better and was able to stop taking blood thinners in February 2010.  He had a wonderful summer playing baseball, and his team even won the championship.  At that point, no one would have detected that anything was ever wrong with Garrett.

In September 2010, he developed another strep infection and did not clot at that point. The next month, we noticed that he was limping, and knew it was likely another DVT.  He returned to Vanderbilt, and it was another DVT, first in the same leg, and then in the other.  We returned to Vanderbilt Children’s Hospital, where he had recurrent DVTs, even on blood thinners.

Garrett passed away on Nov 21, 2010, due to a massive pulmonary embolism. The day before he passed, he was out of bed walking, laughing, and joking with the nurses.  He played Uno with his father on the day he died.  His story shows how quickly things can change when a blood clot happens.  It is so hard to believe that our 8 year old son died from a blood clot, and had his first clot at age 6.

The blood thinners did not dissolve Garrett’s clots.  We are heartbroken and we do not want anyone else to go through the pain of losing a child.  We want people to be aware that even children can get blood clots.  We still do not know whether Garrett had an unknown blood clotting disorder.  I think people do not always realize just how deadly blood clots It is now the one year anniversary of Garrett’s death.can be.  We want to keep Garrett’s memory alive and make people aware of how serious blood clots are, and that they happen to children as well as adults.  Thank you for letting me tell you about our sweet Garrett, who fought such a courageous battle.

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2 Responses to "In Memory of Garrett Elder: His Blood Clot Story"

  1. Stacy C.
    Stacy C. Posted on August 8, 2013 at 6:05 pm

    My heart goes out to the family of Garrett. I am touched by your story as my son was first diagnosed with blood clots at 8 years old in Sept. 2010. He initially had them down both legs, his chest, lung and head. He had other symptoms of random high fevers, lack of energy, erythema nodosum (rash on legs), swollen legs and sleeping all the time. He is normally a very active boy playing every sport he can. After many tests they all came back negative for any known clotting disorders. He was first treated with heparin at Children’s Hospital in Minneapolis, but the clots were not clearing. After meeting with a rheumatologist they decided that his immune system was all revved up and attacking his blood. After several rounds of high doses of Prednisone his body started to respond. They stared him on a weekly dose of Methetrexate and daily injections of Lovenox. In Feb. 2013, they felt he was cured and said to stop everything. Within 2 weeks of stopping the immune suppressant (Methetrexate) he had high fevers and rash and within the month he had clots in both legs again. This time I took him down to the Mayo Clinic in Rochester, MN. After several trips and many tests, there is still no known diagnoses for my son. None of the doctors we have seen has ever seen anything like it. However it does sound familiar to your son’s story. Blood clots in children are rare, but when we don’t answers of why it is extremely scary. Thank you for sharing your story.

  2. Amy Dreher
    Amy Dreher Posted on January 22, 2014 at 8:25 pm

    I am so sorry for your loss. I too finally discovered I have clotting disorder of which I am patiently waiting to get all three of my girls (ages 4, 6, and 10 years) tested for. For years I had positive ANA’s and would get very sick from very common things like CMV (Cytomegalovirus). I also miscarried 5 times. I finally learned that I have undifferentiated connective tissue disease (an auto-immune disorder) and Anti-phospholipid Antibody Syndrome (a clotting disorder). The diagnosis took over 7 years to finally discover.