Our little Shayla came into this world on Sep. 23, 2018 – even though she was a few weeks early, she was a healthy 6lbs 8oz little girl who completed our family of 5.
The first 2 weeks with Shayla were easier than I expected- she was a delightful newborn.
Around 2 weeks old things started to change – Shayla started to vomit and seemed to sleep more than I was comfortable with, so I took her to her pediatrician.
We were sent for an ultrasound to see if she had pyloric stenosis, which could be causing her frequent vomiting – she was negative- so we changed formulas in hopes of relief for her.
Very soon after the formula change, her symptoms worsened – I took her to the hospital to be checked out -my gut said something was wrong. The first hospital said that she wasn’t dehydrated, and to keep feeding her 1 oz every hour. Her temp was 97.0 but she had lost almost 8oz since her 2 week checkup. I was alarmed as a mom, and healthcare professional, by the weight loss and her lethargy – but was told not worry – she had NO fever, so they weren’t concerned. I pushed for answers anyway, so they did a urine test where it was positive for traces of white blood cells in a rapid test. They said they felt it was a false positive, and sent it to the lab -they sent us home without antibiotics because they felt it was too risky at 2.5 weeks old to start her on them as the didn’t believe she had an infection.
I followed up with her pediatrician the next morning, and again over the course of the next 2 days – her symptoms persisted, feeding decreased rapidly, and she barely woke, her temp hovered from 96.7- 97.2.
Every doctor’s visit or ER over the next few days said they were reassured because she had NO temp and felt it was either a small virus or milk allergy. At this point she was having 12 plus diapers a day. I stayed up all day/night syringing formula into her mouth to keep her hydrated. I kept begging for answers/ help from anyone who would listen. After 3 hospitals, and 6 doctors visits and multiple calls to the nurse line since her first symptoms, we landed back at the hospital she was born at-and I refused to leave without answers. I feared Shayla wasn’t going to make it much longer. After hours of them trying to access a vein, they were unsuccessful. We were transferred as non-emergent to the Children’s hospital with no diagnosis, no answers accept they felt she was dehydrated. They still were expressing assurance that she had “No temp” so they weren’t concerned about infection. I kept telling everyone who would listen about her urine test at the first hospital – but no one could find the results, and for some reason they wouldn’t repeat the test.
When we arrived at the children’s hospital they placed an NG tube to try and feed her while they proceeded to try and do a full infection work up, but her veins kept collapsing. By sunrise Shayla was rushed up to the PICU – where we had to make a lot of decisions in hopes of saving her life from an unknown illness. They placed her on life support, placed a central line in her artery, and explained to us they didn’t know what was causing her to be so ill, but they’d do everything to try and save her life-but they wanted us to know the raw truth- they feared she wouldn’t survive the night.
After begging again to consider her urine culture, they were able to access the 4-day old records and pull the lab results that were NEVER given to anyone.
Her doctors came running down the hallway screaming to us that they “Got it, we have the answer” – Shayla was in the middle of spinal tap during this. It was an E-coli infection – she was in severe septic shock. We needed to move fast to save her.
We finally had an answer and the doctors had a plan. Shayla battled for her life- when we found out she was septic she was 4.9 lbs -3 week old fighting for her life due to her un diagnosed UTI and sepsis. (Sepsis and UTI, Sepsis and Children) We spent weeks in the ICU and GI floor on an uncharted roller coaster while she struggled to recover from the effects of sepsis – high ammonia levels, kidney damage, re-feeding syndrome , cardiac arrest, and a severe intestinal injury amongst many other things- Sepsis may have ravaged her body but she wasn’t going to let it win.
One of the main things we were repeatedly told was her temp was low, and that didn’t raise red flags to them. As a newborn, doctors primarily focus on looking out for fevers. They drill that into your head as a parent with a newborn – no one ever stopped to say her temp was too low – her temp never got above 97.3 while her infections spread.
Shayla is coming up on her 2nd year of beautiful life on this earth. Her smile warms this world everyday. Sepsis changed our lives forever, and while we navigate Shayla’s recovery, and the after affects of sepsis, we want to bring awareness so that other families can push for treatment and diagnosis faster- to encourage people to advocate for their loved ones who can not advocate for themselves. In hindsight, as a post partum mom, I wished I knew more about what to look for in a newborn, and what sepsis looks like in babies who can’t speak, sleep a LOT, and often suffer with GI discomfort.
We hope families with fragile newborns in their lives or anyone who needs it can use Shayla’s story as a means to seek answers, and remind doctors that fevers aren’t the only life threatening temperatures in children. Even when a child has a lower than average temp with other symptoms, we encourage everyone to pursue it as a symptom to explore a diagnosis when one can not be found. We will be forever grateful to the amazing and selfless healthcare professionals who saved our little girls life.
Source: Kaitlin W., Mother