Kristine and Ellie R.
Kristine and Ellie’s story, part 1: Experiencing Postpartum and Neonatal Sepsis
Hi. My name is Kristine, and my daughter’s name is Ellie. This is our story.
It all began on July 17, 2014 at 7:32pm. After having two healthy boys we were blessed with a beautiful baby girl whom we named Ellie. I had an uneventful pregnancy until the end when I had a terrible cold at 38 weeks. I thought all it was, was a cold and it was brushed off by both myself and my obstetrician.
By the time I went into labour, my symptoms from the previous week had also disappeared. Ellie’s delivery was uneventful, and she seemed healthy upon initial examination. 3 hours post-delivery is when our lives changed. She had just come back to our room on the postpartum unit and began to have difficulty breathing and turn blue in my arms. Our nurse whisked her away directly to the NICU where she was resuscitated and put on CPAP. She was immediately placed on IV antibiotics, ultimately saving her life.
Ellie’s condition worsened overnight and by the next morning I also began to feel ill. I had severe abdominal pain and could not even walk over to the NICU to see my baby. At first it was chalked up to after pains from birth, but since I had delivered two other children prior to Ellie, I knew these weren’t just after pains. By lunchtime, I had a fever of 105 and was quickly started on an IV.
Shortly after that time, the pediatrician on call was in to let us now that Ellie was very sick. She had a blood infection caused from Group A Streptococcus and needed to immediately be airlifted out to a larger center 3 hours away. She was quickly becoming septic, and it was thought that whatever Ellie had, I had also. The medical team was unsure if she would survive the flight, but Ellie was intubated and picked up by the NICU team from the Foothills hospital in Calgary. There was a period of approximately 6 hours before I could be transferred due to their being only one plane available. Those were the most nerve-racking 6 hours of my life.
Ellie was diagnosed with neonatal septicemia and spent 19 days in the NICU, 9 of those being on Level 3. She had a blood transfusion, 8 lumbar punctures and was treated with a meningitic dose of ampicillin via PICC line. We were told to prepare for the worst, had social work and a chaplain visit us. For the first 5 days I was not even able to see her, as we were both on isolation. Our wonderful nurses would text pictures of her to each other so I could see her. The sight of her intubated and full of wires is something I will never forget. My 34th birthday present was that I was able to hold her for the first time since she stopped breathing in my arms, hours after she was born.
I was diagnosed with streptococcal toxic shock syndrome, which almost resulted in a hysterectomy. I was treated with penicillin, only to find out that I was severely allergic.
From years of researching this illness, I have learned that most times, both mom and baby have been discharged and by then it is typically too late. We were one of the lucky ones. We were still in the hospital when we both fell ill. My dream is to instill proper education pre- and post-delivery, so that hospital staff and especially new mothers recognise the signs and symptoms of sepsis. As well I would love to see an emotional support program for parents of any child who has spent time in the NICU. The path to prevention is education and the path to healing is support.
To learn more about Kristine and Ellie’s story, watch the video below.
Kristine and Ellie’s story, part 2: Understanding the impact of Postpartum and Neonatal Sepsis
Read how Kristine and Ellie’s story began here.
Hi. My name is Kristine, and my daughter’s name is Ellie. This is our story.
In July 2014, Ellie was diagnosed with neonatal sepsis immediately after birth, and spent 19 days in the NICU. She survived, but as Ellie is getting older, we are seeing some very concerning behaviours, learning disabilities, physical limitations, and social anxieties.
In February 2017, at 2.5 years old, Ellie began experiencing episodes of severe screaming, pain, and disorientation, with no identifiable trigger. She went from being a great sleeper to being up multiple times a night. She began repeating words and phrases, and experiencing extreme pain and swelling in her hands and feet. She will tell me she has ‘sparkles on her feet’, where her toes and finger tips are red and hot, and the rest of her hand is freezing. She has trouble in the classroom with focus and attention, frequently staring off and having trouble focusing with her eyes. She has a one-on-one aid due to these symptoms, especially the disorientation, so she is kept safe while at school. She has difficulty urinating at times, and repeatedly has ketones in her urine despite drinking normal amounts of fluids and eating full meals. Cold, stress (positive or negative), and exercise exacerbates these symptoms. She has difficulty regulating her emotions and at times is violent and uncontrollable. She also suffers from severe fatigue at times and does not have the energy/stamina that a child her age should have.
The last few years have been beyond difficult for our family and Ellie especially. Ellie severely lacks confidence at the times she isn’t feeling well and is very dependent and has severe separation anxiety. She lacks coping skills to not only her pain, but now to minor non-pain related adversity.
Not knowing what is happening to her and not knowing how severe the next episode may be is extremely stressful. We have a hard time planning any family holiday and even just daily activities. To see your child experiencing such horrible pain and struggles on a daily basis is heartbreaking. It is a helpless feeling to know you have no way to help your child and take her pain away. Although a diagnosis will not solve all of her problems, it will definitely help provide her with the medical treatment and support at home and in the community that she desperately needs and deserves.
As for myself, I never felt the same physically after she was born. I chalked up my severe exhaustion, pain and fatigue to caring for two young boys and a newborn baby. It has been over 5 years and I am still experiencing these symptoms and they have progressed in severity. In 2016 (almost 2 years to the day) I had strep throat yet again and was being treated with Biaxin (due to my anaphylactic Penicillin allergy). 7 days into my course of antibiotics I became violently ill. High fever, vomiting and severe abdominal pain. I recognized the symptoms immediately as they were almost identical to the symptoms I had after Ellie was born. I was taken to emergency and spent 6 days admitted at our local hospital on IV antibiotics on the suspicion of a sepsis re-occurrence. I was praised for my quick thinking in recognizing the signs and I was able to be treated quickly which resulted in a quicker recovery.
Unfortunately, it has been just over 5 years since our first illness and I still suffer from extreme fatigue, severe leg pain, abdominal pain, frequent migraines, numbness in my arms and legs, dizziness, vertigo, visual disturbances and low blood pressure episodes.
I have had multiple tests done which have ruled out brain tumors and MS but like Ellie, we are still investigating what could be causing these symptoms. Based on my bloodwork and consult with a specialist, it is looking like it may be early stages of Lupus but we are still in the preliminary stages of a diagnosis. I have inquired about both Post-Sepsis Syndrome for both Ellie and I, but due to the lack of research around this diagnosis, we have not been able to find any physician/specialist who agrees that this could be a possibility.
Before becoming sick, I did not know the magnitude of sepsis. I also didn’t know the magnitude of Post-Traumatic Stress Disorder. After almost 5 years I still have nightmares of what we went through. I have guilt that I did not recognize how sick I was and that I did not allow myself to become attached to my newborn baby in fear I would not be taking her home from the hospital. Sepsis robbed our entire family of the most precious time with our family of 5. Our young boys were left at home hours away, while their dad rushed by car to meet their sister when the plane arrived. Luckily our middle son was only 3 and does not have many memories of that time, but it has scarred our then 5-year-old to this day. Not only did they not know what was happening to their new baby sister, but they did not understand why their mom was so sick and not able to come home. The longest time I was away from my boys ever in their whole life was this time.
I am petrified of strep throat when it makes its rounds each year and unfortunately it happens frequently in our house. Once we were discharged, we had weekly neonatal checks for Ellie back at our local hospital, but we did not receive any support for the emotional trauma that we experienced during that time. Social workers visited us in the hospital, but as anyone who has been through a critical, life-threatening illness, you are in fight or flight. Discussions around emotions and feelings didn’t happen for us at that time and I think it could have simply been the fact that if I didn’t talk about the possibility that we may lose her, that it wouldn’t be real.
I am thankful to have this opportunity to be able to share our story and advocate for more education around Postpartum and Neonatal Sepsis. How we can recognize it, how we can treat it, and how we can prevent it.
If our story can touch just one person and let them know they are not alone in their journey with sepsis, then it has served its purpose.