Jonah was our first child. We had a healthy pregnancy, beautiful delivery and approved discharge home. During his 24 hour newborn assessment we were told he failed the cardiac screen where they take a pre and post ductal oxygen saturation measurement and look at percentages and variation between the two readings. This was the very first panic attack I ever had.
My occupational background is pediatric critical care. I spend my days working with severely ill children, many who do not survive or suffer severe impairments. During my pregnancy I talked myself out of all fears of having an ill child. I held my belly and prayed as I watched families lose their children. So to hear anything other than your baby is perfectly healthy was like a bomb went off in my heart. I instantly started panicking and remember texting coworkers who worked in a neighboring pediatric cardiac ICU to my unit what this could mean. After reassurance from a nurse friend and an echo performed showing common PFO and mitral valve regurg I held him in relief that all was well and these benign finding would resolve or never be an issue for his health.
First few days home were beautiful, I was so in love with this boy the universe could come crashing down and I would have no clue. I remember crying as the days went by because no amount of time was enough time to spend with him. Day 5 of life was a regular day in the life of a new mom. I was surrounded by close family, enjoying all the snuggles and was blessed to start pumping on this day because of major milk oversupply. 8 oz in 15 min on day 5... omg.
Later that evening Jonah became fussy. We attributed it to the switch to bottle feeds and most likely gas. But when we finally put him down for bed and minutes passed, my husband woke me up and had me listen.. the grunts and groans grew more persistent. We knew something was wrong. I picked him up in my arms and felt him body radiating heat. My husband searched for the thermometer while I undressed him and called the nurse line of his pediatric office. I watched the thermometer climb and climb until it got past 102 and I hung up the phone and said we need to go. His breathing was irregular, labored and with each breath he let out a grunt. I will never forget running down the stairs with him, throwing his diaper bag on my back and jumping in the back seat of the car with him in my lap prepared to start CPR.
Something I will never forget is feeling the same adrenaline I feel at work when there is a code or RRT called and I am the person responsible for attending, but this time the RRT bag was my diaper bag and that patient was my child.
I called my unit in a panic begging to put the attending physician on the phone and tell me what to tell the ED to do when I get to the hospital. My hospital was too far and we lived down the road from another well known facility. I remember in that moment I couldn’t think.. my actions were nurse driven but my mind and heart were a scared, heartbroken, traumatized mama of this beautiful baby boy I knew was very ill. When we arrived my coworkers had personnel prepared for our arrival. They took him back and began monitoring vitals, assessing him, attempting IVs and asking us questions. After multiple failed IV attempts and hearing him cry out, I had to step out. As they continued to try to get access (6 attempts) the attending physician continued her questions and informing us of next steps.
They did a full sepsis work up involving multiple failed lumbar punctures, began antibiotic/antiviral treatment and transferred us to our room. I remember his being exhausted. He barely opened his eyes or made a sound for 2 days. I remember on day 3 of hospital admission him making eye contact with me again and starting to act himself, be alert and improve. The team was advocating for a PICC line and when I agreed I asked for pain management. With everything he is going through the last thing he needs is screaming and crying through a procedure. The NICU NP brought me back the exhausted, motionless, ill child that I never wanted to see like that again.
When I asked how it went they explained they were unable to get it and when I asked if they gave him something for comfort they explained that’s not how they do it and the next steps would require intubation and sedation for access. Nope! We were life flighted to the hospital I worked in due to not having specialty teams needed for his care (neuro, infectious disease) and more failed attempts of obtaining a PICC line that next day. I was grateful for the care they provided us, but so relieved to transfer to the hospital I call home and knew my son would get everything he needed to overcome this.
Within 2 hours of being admitted into our new hospital, Jonah got his PICC line in 1 attempt with pain medication for comfort and had a full neuro exam performed. Ten more days were spent here completing antibiotic treatment for confirmed GBS meningitis. Infectious disease met with us numerous times and explained to me how rare this scenario is. GBS- mother (odd), presentation 5 days of life (really odd). We were discharged home and a day later readmitted to what they believe was a viral infection probably picked up in the hospital. But unfortunately had to do full sepsis work up again and wait for cultures to return negative. Oh and during all of this there was a giant hurricane which was delaying sending out labs and return results!
I thank God every day we have our now 2 year old GBS survivor. He is the light of my life and has truly shown me how strong love can be. We are now followed by NCDSA to monitor development and his development at this time is mild speech delay and behavioral concerns, but overall living a beautiful life without any major deficits. He has been sick with various viral illnesses numerous times since our event which makes me question overall GBS meningitis impact on immune response. He also displays severe behavioral concerns while ill which also makes me worry about inflammatory, immune, neuro responses after injury.
I would love to speak with other parents with similar concerns or recent findings on long term effects. For those who have lost a child to GBS sepsis/meningitis I have no words to express the empathy I have for you. Your family is in my nightly prayer and I pray for peace, love and hope for you each and everyday.
-Breyana Guzman
I am a PICU RN that shares my story with my patients families to give hope and provide understanding
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.