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Posted March 7, 2014
An All Children’s Spotlight on Blood Clot Awareness Month

With March designated Blood Clot Awareness Month, it's an ideal opportunity to underscore the dangers of blood clots and showcase the cutting-edge research and treatment being conducted by the Pediatric Thrombosis Program at All Children's Hospital . The program combines the expertise of All Children's Hospital and Johns Hopkins Medicine to help children who have developed a blood clot in the veins (venous thrombosis) or arteries (arterial thrombosis).

ACH's Pediatric Thrombosis Program is directed by Dr. Neil Goldenberg, recruited by All Children's and Johns Hopkins University in 2012 from one of the top pediatric blood clotting programs internationally, the Mountain States Regional Hemophilia and Thrombosis Center at Children's Hospital Colorado.

It's important to know that blood clots can strike anyone, regardless of age, gender or race - from infants to senior citizens. In fact, someone is diagnosed with a blood clot once every minute. The good news is that many clots are preventable. And when they do occur, positive outcomes can be achieved with proper diagnosis and management.

As part of Blood Clot Awareness month, we are publishing a series of stories on throughout March that focus on various aspects of the care we provide children dealing with blood clots. For more information about blood clots, visit the Pediatric Thombosis Program Web site or the National Blood Clot Alliance.

Our initial story (below) is a first-person account as told to us by a South Carolina mother whose toddler daughter was diagnosed with a blood clot in her brain - an ordeal that ultimately led to All Children's for answers and successful treatment.

A Mother's Story: An Unexpected Turn in the Road with a Toddler's Blood Clot

In the words of Melissa Edmonds

mma Edmonds
Emma Edmunds
Edmunds Family
Edmunds Family

Until six months ago, my husband and I had what you would describe as a typical whirlwind life in the small, South Carolina town of Lexington. Our precious and energetic children, 3-year-old Austen and 2-year-old Emma, kept us constantly on the run while I balanced my job as a civil engineer and Mike immersed himself in his work as a mechanical engineer.

But then, completely out of the blue, our world was turned upside down by something we never even knew could happen to a child. Emma suffered a blood clot in the brain.

Until hearing that surreal diagnosis from doctors at Palmetto Health Children's Hospital in nearby Columbia, Mike and I associated "strokes" with adults. We'd later learn that the type of blood clot that caused Emma's ordeal had a complex medical name - technically known as cerebral sinovenous thrombosis, or CSVT. We'd also find out that it's actually quite common among the kinds of blood clots that children can get. Cerebral sinovenous thrombosis is when a blood clot develops in the veins that normally function to return blood that has already given its oxygen and nutrients to the brain back toward the heart. It's the same type of blood clot that former Secretary of State Hillary Clinton had.

Our hope in telling this story is to bring enhanced awareness to the issue of blood clots in children. Perhaps this may help other parents who've had a child experience a CSVT, or help provide answers for doctors who have seen a case like that. We're just so thankful that we received such incredible care, both at Palmetto Health Children's Hospital with Dr. Ron Neuberg and at All Children's Hospital in St. Petersburg with Dr. Neil Goldenberg. It's a road we never expected to travel, but we want to lighten the load for those who find themselves on a similar unexpected and frightening journey.

Everything was normal during the pregnancy with Emma. The only potential issue, far from my mind at that time, is that I was previously diagnosed with a rare hereditary blood disorder called Antithrombin III Deficiency. I knew that one of my grandfathers had significant issues with the condition, when he clotted in the U.S. Army and nearly died. My mother had a stroke when she was pregnant with me. And I'd developed a blood clot in my leg in my early 30s, perhaps because I'd been taking the birth control pill and was basically sedentary at work. At any rate, I was placed on blood thinner medicine during the pregnancy, but there were no issues with pregnancy or with Emma on the ultrasounds.

She was a C-section baby but not because of any complications - it was that when they induced labor, she wasn't in the right position. We had wanted both kids to be tested for the same genetic disorder that I have. But the doctors had all told us to wait, that there was nothing to do unless symptoms manifested.

It wasn't until Emma actually suffered a blood clot that she was tested in October, and that's when we discovered that she shared the Antithrombin III Deficiency blood clotting disorder with me. The week before the clot, she came down with what I thought was a stomach bug. She'd thrown up most of the morning but had rebounded during the afternoon. Throughout the rest of the week, Emma was fine but grew tired more easily. I took her to the pediatrician's office on a Wednesday and they discovered an ear infection. But it seemed like more than just an ear infection, so I asked them if they'd do a blood test to see if anything else was wrong.

That's when they learned that Emma, who's a very picky eater, was anemic. The same day they gave her the first of three shots for her ear infection. But she didn't improve. Back home on Thursday, Emma vomited several times and had trouble waking up. When I brought her back to the doctor's office, they concluded that her listlessness was the result of dehydration.  That night, they gave her a bolus and she perked up a bit, eating some at home. But Friday morning, she struggled to wake up and once again began throwing up. We immediately returned to the pediatrician's office, where the doctor decided it was best to admit Emma to the hospital.

Doctors at Palmetto Health Children's Hospital reiterated the initial belief that Emma was dealing with anemia and dehydration. They considered various possibilities of the cause, such as a bladder infection. In the hospital, she was displaying some odd symptoms, acting at times as if she had a gas bubble and curling up in pain. They thought the problem might have something to do with her intestines, but a series of ultrasounds didn't reveal any problem.   Still, my thoughts continued to race. I had started to think Emma had contracted West Nile Virus because she likes to play outside a lot, and it gets hot and steamy here in Lexington. I wondered if an infected mosquito had bitten her.  Another 24 hours passed when they decided to do a scan of her brain. And the results shook us to our core. There was a mass.

When somebody tells you there's a mass in your child's head, everything becomes an emotional blur.  It feels like a terrible, waking dream. My husband took comfort in his faith and family, and I think it helped me most that my mom, who's a nurse practitioner, was there with us. The doctors weren't sure what kind of mass they were looking at. But with my history, they were concerned that it may be a large blood clot. By the time they got her up into the ICU, Emma wasn't moving her left side.

At least there was one silver lining: We were in the hospital when this took place. Who knows what would have happened if we hadn't been?

It didn't take long for doctors to evaluate Emma and determine that she had indeed suffered a stroke; furthermore, it was probably related to my blood-clotting disorder. They raced into action, putting her on blood thinners and monitoring her reactions. And all I could think was, "A stroke? How is this possible for someone so young?"

It turns out that what happened is that the large CSVT had caused enough back-pressure on the brain to cause some bleeding into the brain tissue. It was this "bleeding stroke," as a complication of the cerebral sinovenous thrombosis - along with some brain swelling - that caused the paralysis on the left side. And it was the CSVT itself that had caused the listlessness and vomiting. Whether the vomiting and dehydration had caused the CSVT, or whether it was originally caused by the CSVT, was unclear.

My husband and I weren't even sure at this point if our little girl was going to make it, or what condition she'd be in if she did. The doctors told us that they'd seen blood clots and strokes in several children about Emma's age, due to one reason or another, but that didn't lessen our anxiety.  Nobody could tell us the shape she would be in, and there was some concern that she might have long-term issues.

Fortunately, Emma began to stabilize and make a quick comeback. We were in ICU for 72 hours and by the end of the first day after starting blood thinners, you could see she was beginning to regain movement on her left side. The anemia was further diagnosed as iron deficiency anemia, and she was given iron replacement.

Once we moved out of ICU and into her regular hospital room, Emma was walking and moving just fine - what an incredible relief after all the uncertainty! It was truly amazing.

Before we returned home, the nurses trained us how to use blood thinners and administer shots twice a day. It took a while to get all that under control and, unfortunately, we weren't out of the woods. Emma ended up with a bleed in her intestines five weeks after we left the hospital. We think it might have been caused by trauma created by the needle from one of the shots, but it could have also been "spontaneous." Emma had to stay in the hospital 15 days for that bleeding complication (which required a surgery to remove part of the injured intestine) - an experience that proved even more difficult than the CSVT.

Our eventual path to All Children's unfolded when Dr. Neuberg recommended that we see another expert in the field, Dr. Goldenberg at All Children's Hospital Johns Hopkins Medicine in St. Petersburg, FL. We made an appointment and drove down from South Carolina, working in a visit to Disney World after all Emma had been through. She loved Mickey Mouse, even though the hotel room made her uncomfortable because it felt like being back in the hospital.

When we got to All Children's, we met Dr. Goldenberg in a clinic. And from that first moment, he has been excellent. He's spent a lot of time with us and everything he's said has made sense. He also provided a lot of answers, and a few other things to look into by way of possible causes for the CSVT (on top of the antithrombin deficiency). He also helped to put Emma's story in the context of other children and young adults with antithrombin deficiency, and outlined a plan for how long to be on blood thinner and how to "wean" it as safely as possible.

To keep her risk of future clots as low as possible-given her antithrombin deficiency and CSVT - we will need to make sure we act early to prevent dehydration if she has an illness in the future, treat ear infections promptly, make sure her nutrition is sufficient to prevent the iron deficiency anemia from coming back, make sure she doesn't smoke when she gets older, make sure she avoids the birth control pill when she's older, and make sure the doctors consider low-dose blood thinners if she's hospitalized again in the future.

At 2 ½, Emma's back to acting like a normal little girl now. Today, the only effect I can see is some stiffness on her right leg; most people might not notice it, and we think this will continue to improve as she grows. Dr. Goldenberg provides regular consultation with Dr. Neuberg by phone and email so we don't have to make trips to All Children's. We've learned as a result of Emma's experience that Austen has the same condition, but thankfully he hasn't had any issues.

We're glad to say that Emma's future is still as bright as ever. We're thankful to God for the many blessings we've received, and we're forever grateful to our family and friends for the love and support they showed us during this crisis.  We would like to say a special thank you to Dr. Goldenberg, Dr. Neuberg, Dr. Tom Bannister, Dr. Juan Camps, and Dr. Kyle Guyton.  They've gone above and beyond to insure that Emma has received the care she needed.  And we credit the amazing help she's received from the dedicated hospital staffs along the way in South Carolina and St. Petersburg.

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