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Every Parent’s Nightmare

We worry about our children from the day they are born or perhaps even from the day we find out that are we are pregnant. In September of this year, we had the scare of our lives as parents.  After living through this nightmare, I was told by many parents that I should blog about our experience to help raise awareness of the symptoms of joint sepsis in children.

On a typical Thursday evening we thought our 11 year old daughter had the stomach bug that was going around the middle school. She had a fever of 103.4 and was throwing up.  This lasted all of Thursday night and most of the day on Friday. But by Friday evening she felt somewhat better and the fever had dropped to 99.5.  We thought we were out of the woods, but she was up much of Friday night with a fever and throwing up. I even told another mother on Saturday morning that this was the worst virus I had ever seen and I hoped other kids didn’t come down with it. Later Saturday morning, when our daughter tried to get up, she couldn’t walk. She was in severe pain. Even the weight of her leg hanging when we carried her was unbearable. We knew something was wrong. Fortunately for us, our good friend, Maureen is a Pediatric PA. She took a look at her and told us to go to the ER that she thought she had a septic hip.  “A what!!” I exclaimed. How does a perfectly healthy child get sepsis?

We rushed to the ER and were there for over 4 hours.  They did some blood work, an x-ray and we were told she had Transient Synovitis, which is when a viral infection moves into a joint. We were told it isn’t serious and that it will go away on its own. We were sent home with a child still unable to walk and in excruciating pain.  That night things got even worse, she was up all night with a fever, throwing up and in unimaginable pain. In the morning, I called my friend, Maureen. She said she really felt like our daughter had sepsis and that the ER was incorrect. She reached out to our doctor (with whom she works.) He was not on call this particular weekend but lucky for us, he went ahead and met us at his office early on a Sunday morning. Within just a few  minutes, he said, “I am pretty confident that this is a septic hip.” We were admitted to the local hospital where blood test and an ultrasound confirmed the diagnosis.  

While my husband went home for the night to prepare for an oncoming hurricane (we live on a barrier island off the coast of NC,) my daughter and I were taken via a 3.5 hour ambulance ride to University of North Carolina (UNC) Children’s Hospital. We arrived in the middle of the night and within 5 hours of our arrival, I had already met with the Pediatric Team, the Infectious Disease Team, the Orthopedic Team, they had drawn their own labs, done an MRI and our daughter was in pre-op for a joint aspiration.  After that surgery her pain was a bit better due to some pressure being relieved.  That surgery along with the MRI and blood work confirmed the seriousness of her diagnosis and within 2 hours of waking up from the first surgery, she was back in surgery again.  This time they had to open up her hip and go in and clean the infection out of her hip.  A drain pump was inserted to remove the fluid. She was in excruciating pain after this surgery. To say that my heart was breaking for her is an understatement.  She was put on very strong antibiotics while we stressfully awaited the 48 hours for cultures to grow to see if the bacteria was treatable with antibiotics (i.e. that it wasn’t antibiotic resistant.)  She was given an echo-cardiogram to ensure that there had been no damage to the heart. “What!!! This was a possibility?” Another thing to worry about.   Fortunately the results were excellent!  We found out that the bacteria would respond to antibiotic treatment so next we moved into a “wait and see mode” as we waited for the antibiotics to do their thing.

To be considered free of bacteria, blood cultures have to be clean for at least 72 hours. Four days after surgery we had a big scare as the blood culture came back still positive for bacteria.  They were getting her ready for a 3rd surgery when the orthopedic team came in and said that they thought that maybe pulling the pump the prior day could have caused bacteria to backwash into her blood stream and the blood test picked up on that.  So the infectious disease team agreed to wait 24 hours for another blood sample. This was a huge relief as our daughter, who starting to get some relief, was terrified of having this clean-out surgery again as it caused her extreme pain the first time. Fortunately, the orthopedic team was correct and her blood was clean 24 hours later. So now we were 24 hours into our 72 hour wait before she could be considered for discharge. Once her blood was good, she went in for a minor surgery to have a PICC line installed to deliver IV antibiotics for several weeks before she could transition to oral antibiotics. She also started physical therapy to learn to walk with a walker.

She ended up in the hospital for 9 incredibly stressful days. It was difficult for my husband and I to see her in this kind of pain.  We were physically and mental exhausted. We tried to shield her from the seriousness of her condition and it was very difficult to stay positive and not breakdown. I know any parent who has experienced a seriously ill child can relate. It was without a doubt the worst 9 days of my life. I swear that still today when I think about it -  I have PTSD. It makes me almost nauseous.

While at UNC-Children’s Hospital we were educated on the ramifications of not getting timely treatment of sepsis in a joint.  Because the hip is still growing, it is of utmost importance to protect the cartilage. Patients who sustain damage to their cartilage are risking permanent hip joint damage. These patients may require hip replacement later in life if the damage to the cartilage is severe.  There can be complications such as osteomyelitis, bony erosions, damage to the heart and other organs and even death.

Until this, we had no idea that a perfectly healthy, very active, 11-year-old girl could get sepsis in her hip.  Nor did we know how serious and how painful it could be.  Once the antibiotic was working and she was out of immediate danger, we began asking questions about her long-term prognosis as she isn’t the sit around the house and watch TV or read kind of kid.  She is a middle school cheerleader, plans to tryout for the track team, she bikes, surfs, swims, kneeboards and tubes. She never sits still.  The thought of long-term damage, still weighs very heavily on me as I keep thinking --- “was there something else I could have done after the visit to ER with a misdiagnosis?”  In my gut I knew something was wrong.

The delay caused by the misdiagnosis made it day 5 since first symptoms. After 5 days is when one can get into trouble with complications. We won’t know if her growth plate was damaged until we return to UNC Children’s Hospital early next summer. Her orthopedic surgeon feels pretty confident that all will be ok. Once she was in hospital, with the help of the doctors, we had traced back her symptoms.  We learned that her hip hurt her on Wednesday during PE, but she thought she had pulled it in cheer practice and she wanted to cheer at the football game Wednesday night. I also recalled that on Friday, when we thought she had a stomach bug, she mentioned that her leg hurt.  She didn’t say hip.  I chalked it up to a sports injury.  Because for the life of me I couldn’t imagine that fever, throwing up and joint pain could mean a septic joint.  I had never heard of such thing. If it weren’t for our good friend, Maureen, being insistent on this being sepsis, I am not sure what we would have done. I shudder to think of the outcome. 

At this point, I am sure you are all asking “how does a perfectly healthy child end up with sepsis in her hip???” What we learned is that she likely had a cut somewhere on her body and the bacteria got into her blood stream when she came in contact with it. The bacteria was Staphylococcus aureus which is a very common bacteria found everywhere. Typically your body fights it off but for some reason, unknown to the doctors, several thousand perfectly healthy kids a year don’t fight it off and it takes up residence in synovial fluid in a joint area. So we will never know how or where she picked this up or why her body didn’t fight it off. 

While I hope you never have to experience anything like this in your lifetime, I do hope that by writing this article, others can learn more about sepsis in a joint and get quick treatment. While this is not very common (about 5 kids out of every 100,000 kids) it is scary when your kid is one of them. If your child has a fever and has severe joint pain --- shoulder, hip, knee, ankle, elbow or wrist -  it is a medical emergency.  Don’t make light of it. Insists on blood work, x-ray, ultra-sound and be sure to have them seen by a pediatrician, as this is more common in kids than adults. And from what we have learned septic joints are missed quite a bit by general ER docs that are not trained in pediatrics.

Finally, we would like to thank Maureen Young, our awesome Pediatric PA; Dr. Andy Kiluk, who is incredibly gifted at what he does, for rushing to office and giving up his Sunday to ensure that Peyton was diagnosed and transferred to UNC Children’s Hospital where she received exemplary care.  And a HUGE thank you to the following groups at UNC Children’s Hospital (they were wonderful) -  the Pediatric Team, the Orthopedic Team, the Infectious Disease Team, Radiologist, Cardiologist and Physical Therapy. So happy to have such a great resource in North Carolina!

Now..... go hug your kids because I learned that we are not promised a tomorrow. It can all be striped away in the blink of an eye. We were lucky, but it was way way way to close for comfort!!!