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MILLER — CANADA
Born November 5, 2017 Late-onset Mother's GBS Status: Negative Gestational Age: 38 weeks Age Harmed: 4 weeks of age |
July is international Group B Streptococcus (GBS) Awareness Month.
Many women know GBS to be “that swab test that gets done around 36 weeks pregnant” and, like myself, told it’s no big deal. If you test positive, you get antibiotics on labour day, if you test negative, you are good to go, and that is it. I tested negative for this GBS swab test, that I knew nothing about, but because I was negative it was left at just that. Something I “didn’t have to worry about.”
There might be someone out there that our story will help.
When Miller was born, he was nicknamed chill Mill for his laid back personality. When he turned 3 weeks old, that all changed. It was my first week home alone with him as my mom flew back to Ontario and Ryan went back to work. Instead of the chill baby I had come to know for 3 weeks, I was dealing with an extremely inconsolable, irritable son who would not tolerate being held or eating. This went on for several days, but I thought “Hey I’m new at this, babies change weekly, right?”
Then came the weekend. I noticed Miller's cry started sounding a bit weaker, and his breaths to be quicker.
On Saturday, a half hour after eating, he projectile vomited across the room. Both Ryan and I were stunned by this, but sort of wrote it off as a baby being too full. Saturday night came and since we were still doing shifts, I went to bed. I woke up at 3 to switch off, and Miller was sleeping soundly. I brought him to bed with me, and the next thing I knew it was 7am and he was STILL sleeping. This child had not slept that long in his 4 weeks of life (still doesn’t) so I knew something was wrong. I brought him to his change table, he didn’t wake up. I brought him to the couch, he didn’t wake up. I felt how cold his nose was. I took his temperature, it was fine. I googled “cold nose” on a baby, said lots of skin to skin. I laid with him on the couch bundled up for what felt like hours.
Ryan woke up a little bit later, and by that time I was beside myself. He took Miller for a diaper change, and it was bad. Mucous and very foul odour. All of my alarms and senses were going off now. I just couldn’t stop crying. We made the decision to go to the children’s hospital because “I’d rather spend 6 hours in emergency to be told to go home, than not go and wish we did.”
Well, I’ve never understood what “a mother’s instinct” meant until this day.
When we arrived to ACH, we waited in triage for about 10 minutes for me to be asked, "why are you here today?" All I could get out of my crying mouth was “He just won’t wake up.” Fast forward 30 minutes -- we were in the trauma bay unit, and Miller was hooked up to everything imaginable. I'm so thankful for Ryan’s strength to stand with Miller at his side, I was so weak and numb I couldn’t get out of my chair. We had a surgical team bedside weighing the possibilities of NEC (necrotizing enterocolitis), he had blood cultures taken, and hooked up to three different antibiotics immediately. A few hours later, he received a lumbar puncture.
Reality set in for us when we asked the nurse how long she thought we would be there since we have a dog that needs to be let out, and her response was “I’m not exactly sure, but a few weeks at least.” Miller was admitted that evening. I didn’t think things could be worse than this day.
The next day, I was holding Miller, attached to several lines and tubes, I noticed his front soft spot on his skull was starting to bulge. I feel so fortunate to work in a medical field to know these types of things, and IMMEDIATELY requested the doctor to come. He came, and he agreed with me that indeed Miller’s brain was swelling/and or pressure making the bulge. An MRI was booked for the following day, I did not feel comfortable waiting and pleaded he ask the Radiologist for a second opinion. As we waited to hear back, Ryan held onto Miller on the bed, talking to him about everything they were going to do together as he grew up big and strong. I sat bedside beside them, unrecognizable I am sure from all the tears, just waiting and waiting. I have never been so scared in my entire life, and yet so helpless in that moment.
We tried to get some sleep, when at 11pm our door flung open to a team coming in to bring Miller down for a stat brain MRI. The Radiologist agreed it was concerning and approved a late night scan to take place. I was relieved and terrified at the same time. Watching your 4 week old be prepped and scanned was gut wrenching, but even worse was waiting for the results. The Dr. came in around 2am to personally tell us that Millers brain scan came back “completely normal.” This gave us the biggest sigh of relief you could ever imagine.
The next day was several tests and pokes as he had to have a constant IV running, and a different IV site every other day 😞
On Wednesday the test results came back. It takes 48 hours for blood cultures to grow completely. He was diagnosed with “Bacterial meningitis and septicaemia caused by Late-onset Group B Streptococcus”
But I was negative? I had a c section? What is late onset? Why did no one talk about this when I was pregnant? Why do I know nothing about GBS?
I was so sad, I felt this guilt that I was the one that caused this to happen.
When speaking with a doctor later on, I found out that the antibiotics given to women during pregnancy to protect against GBS, is actually only preventing “early-onset” and that there is no way to protect against late-onset. So even if I would have had the antibiotics during labour, this still would have happened.
After we knew what we were dealing with, the infection prevention doctor. at ACH set up a plan for our babe. High intensity antibiotics to kill off the GBS. The AMAZING trauma team had already started him the day we arrived on the antibiotics that he needed to live. We got rid of the other two that were precautionary and focused on the one.
He was stable. He was thriving. He was alert and happy. The doctors were so happy with his progress. We just had to wait out the days to be discharged. He had another ultrasound, more X-rays, and one more brain MRI before that could happen though.
Just before Christmas we were able to go home. Miller beat the odds. He fought through every single day and he did it. He will be followed up with a paediatrician that specializes in this until at least 5 years old, with hearing tests every 3 months or so (which he has been rocking no problem so far). This is nothing in comparison to the statistics of this disease. One in 10 babies infected with GBS will die. Half of the babies who developed GBS meningitis will be left with some sort of long-term disability. It is the leading cause of meningitis and septicaemia in newborns
In the weeks after this traumatic event, I learnt a lot about GBS and meningitis. It pained me that I knew NOTHING about it before having a child. I know lots of people in the medical community that also didn’t know late onset GBS is even a thing. I took prenatal classes, several OB appointments, plus my day to day work and STILL zero knowledge. Now, I know every symptom off by heart, and if I can help ANYONE out there, then sharing our story is worth it to me.
I know most babies are not as lucky as Miller is. The Dr. figured 12 more hours without antibiotics would be irreversible brain damage, 24 hours later the unthinkable. We really did save his life by noticing something wasn’t right and acting on it.
When in doubt, have them checked out.
I don’t mean to scare anyone, but I believe there needs to be more education given to expecting parents because it really would save little lives 💙. I feel it should be incorporated into prenatal classes or at any OB appointment. Some sort of pamphlet handed out with the warning signs and symptoms. If I had a checklist of these symptoms 7 months ago, we would have checked off nearly every box. There are lots of recourses I have found online and through my own recovery of dealing with this. I hope by helping to spread awareness that GBS IS a big deal, changes will follow and more parents will become educated in this devastating bacteria that can change your world in a matter of minutes.
#GBSISabigdeal
#GBSawareness
~ Steph Kirby
Steph shares their story online and works in a hospital, so spreading the awareness there as well
Many women know GBS to be “that swab test that gets done around 36 weeks pregnant” and, like myself, told it’s no big deal. If you test positive, you get antibiotics on labour day, if you test negative, you are good to go, and that is it. I tested negative for this GBS swab test, that I knew nothing about, but because I was negative it was left at just that. Something I “didn’t have to worry about.”
There might be someone out there that our story will help.
When Miller was born, he was nicknamed chill Mill for his laid back personality. When he turned 3 weeks old, that all changed. It was my first week home alone with him as my mom flew back to Ontario and Ryan went back to work. Instead of the chill baby I had come to know for 3 weeks, I was dealing with an extremely inconsolable, irritable son who would not tolerate being held or eating. This went on for several days, but I thought “Hey I’m new at this, babies change weekly, right?”
Then came the weekend. I noticed Miller's cry started sounding a bit weaker, and his breaths to be quicker.
On Saturday, a half hour after eating, he projectile vomited across the room. Both Ryan and I were stunned by this, but sort of wrote it off as a baby being too full. Saturday night came and since we were still doing shifts, I went to bed. I woke up at 3 to switch off, and Miller was sleeping soundly. I brought him to bed with me, and the next thing I knew it was 7am and he was STILL sleeping. This child had not slept that long in his 4 weeks of life (still doesn’t) so I knew something was wrong. I brought him to his change table, he didn’t wake up. I brought him to the couch, he didn’t wake up. I felt how cold his nose was. I took his temperature, it was fine. I googled “cold nose” on a baby, said lots of skin to skin. I laid with him on the couch bundled up for what felt like hours.
Ryan woke up a little bit later, and by that time I was beside myself. He took Miller for a diaper change, and it was bad. Mucous and very foul odour. All of my alarms and senses were going off now. I just couldn’t stop crying. We made the decision to go to the children’s hospital because “I’d rather spend 6 hours in emergency to be told to go home, than not go and wish we did.”
Well, I’ve never understood what “a mother’s instinct” meant until this day.
When we arrived to ACH, we waited in triage for about 10 minutes for me to be asked, "why are you here today?" All I could get out of my crying mouth was “He just won’t wake up.” Fast forward 30 minutes -- we were in the trauma bay unit, and Miller was hooked up to everything imaginable. I'm so thankful for Ryan’s strength to stand with Miller at his side, I was so weak and numb I couldn’t get out of my chair. We had a surgical team bedside weighing the possibilities of NEC (necrotizing enterocolitis), he had blood cultures taken, and hooked up to three different antibiotics immediately. A few hours later, he received a lumbar puncture.
Reality set in for us when we asked the nurse how long she thought we would be there since we have a dog that needs to be let out, and her response was “I’m not exactly sure, but a few weeks at least.” Miller was admitted that evening. I didn’t think things could be worse than this day.
The next day, I was holding Miller, attached to several lines and tubes, I noticed his front soft spot on his skull was starting to bulge. I feel so fortunate to work in a medical field to know these types of things, and IMMEDIATELY requested the doctor to come. He came, and he agreed with me that indeed Miller’s brain was swelling/and or pressure making the bulge. An MRI was booked for the following day, I did not feel comfortable waiting and pleaded he ask the Radiologist for a second opinion. As we waited to hear back, Ryan held onto Miller on the bed, talking to him about everything they were going to do together as he grew up big and strong. I sat bedside beside them, unrecognizable I am sure from all the tears, just waiting and waiting. I have never been so scared in my entire life, and yet so helpless in that moment.
We tried to get some sleep, when at 11pm our door flung open to a team coming in to bring Miller down for a stat brain MRI. The Radiologist agreed it was concerning and approved a late night scan to take place. I was relieved and terrified at the same time. Watching your 4 week old be prepped and scanned was gut wrenching, but even worse was waiting for the results. The Dr. came in around 2am to personally tell us that Millers brain scan came back “completely normal.” This gave us the biggest sigh of relief you could ever imagine.
The next day was several tests and pokes as he had to have a constant IV running, and a different IV site every other day 😞
On Wednesday the test results came back. It takes 48 hours for blood cultures to grow completely. He was diagnosed with “Bacterial meningitis and septicaemia caused by Late-onset Group B Streptococcus”
But I was negative? I had a c section? What is late onset? Why did no one talk about this when I was pregnant? Why do I know nothing about GBS?
I was so sad, I felt this guilt that I was the one that caused this to happen.
When speaking with a doctor later on, I found out that the antibiotics given to women during pregnancy to protect against GBS, is actually only preventing “early-onset” and that there is no way to protect against late-onset. So even if I would have had the antibiotics during labour, this still would have happened.
After we knew what we were dealing with, the infection prevention doctor. at ACH set up a plan for our babe. High intensity antibiotics to kill off the GBS. The AMAZING trauma team had already started him the day we arrived on the antibiotics that he needed to live. We got rid of the other two that were precautionary and focused on the one.
He was stable. He was thriving. He was alert and happy. The doctors were so happy with his progress. We just had to wait out the days to be discharged. He had another ultrasound, more X-rays, and one more brain MRI before that could happen though.
Just before Christmas we were able to go home. Miller beat the odds. He fought through every single day and he did it. He will be followed up with a paediatrician that specializes in this until at least 5 years old, with hearing tests every 3 months or so (which he has been rocking no problem so far). This is nothing in comparison to the statistics of this disease. One in 10 babies infected with GBS will die. Half of the babies who developed GBS meningitis will be left with some sort of long-term disability. It is the leading cause of meningitis and septicaemia in newborns
In the weeks after this traumatic event, I learnt a lot about GBS and meningitis. It pained me that I knew NOTHING about it before having a child. I know lots of people in the medical community that also didn’t know late onset GBS is even a thing. I took prenatal classes, several OB appointments, plus my day to day work and STILL zero knowledge. Now, I know every symptom off by heart, and if I can help ANYONE out there, then sharing our story is worth it to me.
I know most babies are not as lucky as Miller is. The Dr. figured 12 more hours without antibiotics would be irreversible brain damage, 24 hours later the unthinkable. We really did save his life by noticing something wasn’t right and acting on it.
When in doubt, have them checked out.
I don’t mean to scare anyone, but I believe there needs to be more education given to expecting parents because it really would save little lives 💙. I feel it should be incorporated into prenatal classes or at any OB appointment. Some sort of pamphlet handed out with the warning signs and symptoms. If I had a checklist of these symptoms 7 months ago, we would have checked off nearly every box. There are lots of recourses I have found online and through my own recovery of dealing with this. I hope by helping to spread awareness that GBS IS a big deal, changes will follow and more parents will become educated in this devastating bacteria that can change your world in a matter of minutes.
#GBSISabigdeal
#GBSawareness
~ Steph Kirby
Steph shares their story online and works in a hospital, so spreading the awareness there as well
To learn more about Perinatal & GBS Misconceptions, click HERE.
To learn more about the Signs & Symptoms of Preterm Labor, click HERE.
To learn more about the Signs & Symptoms of GBS Infection, click HERE.
To learn more about Why Membranes Should NOT Be Stripped, click HERE.
To learn more about How to Help Protect Your Baby from Group B Strep (GBS), click HERE.
To learn more about the Signs & Symptoms of Preterm Labor, click HERE.
To learn more about the Signs & Symptoms of GBS Infection, click HERE.
To learn more about Why Membranes Should NOT Be Stripped, click HERE.
To learn more about How to Help Protect Your Baby from Group B Strep (GBS), click HERE.