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LILIAN PAIGE (LILY) — USA
November 15, 2012 Early-onset Mother's GBS Status: Tested positive Gestational Age: 38.5 weeks (c-section) Age harmed: At birth and 6 days old |
On Nov 15, 2012, we welcomed Lilian Paige into our world, at 6lb 8 oz, 20 in. She was our second baby girl, and I had been diagnosed as GBS positive at my 36 week OB appt. I didn't think much of it, considering I had also been positive with our 3 year old daughter, and she had been perfectly healthy, with no issues. I had difficult labors with both girls (small pelvic bone, and large babies), but Lily's birth seemed less traumatic, from the standpoint that I only pushed for 90 mins versus 3 hours. Like our older daughter, Lily had to be delivered via vacuum assist, but all seemed well with her APGAR scores, and she looked healthy and perfect. Once she had been assessed, as I held her, I noticed she was grunting, and having trouble breathing. I panicked, and the nurses quickly whisked her away to the transitional NICU, to undergo further testing and observation. I was completely exhausted, and terrified, as I had never experienced a NICU situation, and this was completely unexpected.
As I was transitioned into our hospital room, I was overcome with anxiety, but knew I needed to get some sleep, so my husband and I squeezed in several hours, awaiting a call from the nurses in the transitional NICU. As my gut instinct had indicated, the phone rang with the news that she had been admitted into the NICU, as her bloodwork had shown a high WBC count indicating infection. The doctors administered antibiotics for 3 days, to kill whatever was growing in her tiny system. On day 3, the neonatologist ran a final culture, and gave us the good news that no infectious bacteria had grown in the past 24 hrs, with the green light to finally take our baby girl home. However, he wanted her seen the next day by her pediatrician, to be 100% certain. This was on Sunday evening.
The following afternoon (Monday), we visited our pediatrician, and he seemed a bit concerned, as she was lethargic, and her jaundice did not seem to be improving. He wanted us to watch her closely overnight, and to have a complete blood workup done the following day. By Monday night, Lily had stopped nursing, or latching onto me. She had been a pro nurser from day one, even hooked up to NICU machines, so this alarmed me. By Tuesday, she was worsening, and when bottle fed, would not latch well, and would dribble milk all over herself (trouble feeding). Her bloodwork came back that night, with increasing WBC counts, slightly over the normal newborn level. Our doctor ordered another set for the following morning. During that night, Lily totally stopped waking for feeding (lethargy), and her cry had turned weak, almost whimper like. She was listless and floppy, so the next morning, I rushed her to the clinic for her 2nd round of bloodwork. Her WBC had skyrocketed, and her 2 other results were also indicating infection. Our dr told us to go to the Children's ER immediately. I was completely floored, and felt like my world was ending. Once admitted, Lily became even more unresponsive, her breathing became strained, and she was pale and cold. Naive as I was, I knew things were deteriorating quickly, and whatever was happening was becoming more serious by the minute. The ER doctor performed a spinal tap, and after bringing her back into the room, she began seizing in my arms. The nurses grabbed her from me, and ran down the hall to the trauma room.
I felt like I was having an out of body experience. Moments later, my husband and I were summoned into the trauma room, where Lily was hooked onto a ventilator, and monitoring machines. The nurse explained the levels, and we could quickly see that her oxygen levels were poor, her heart rate was low. She stopped breathing several times, nearly coded, and had to have oxygen administered to resuscitate her. A chaplain came into the room, and said he comes in to see all families with children in the trauma room. So this is where children die, was all I could think. She was rushed in for a CT scan, as the doctor was concerned about a possible brain bleed, or infection growing in her brain. It felt like someone else I was watching from up above, 2 parents standing helpless, while a child barely out of my womb was wheeled off into her scan, to determine her fate all the while, hooked up to beeping monitors and oxygen that was helping to sustain her. The scans showed no bleeding, or infections growth on the brain. Lily-1 GBS-1. The playing field was even. I knew our girl could fight, something in me just knew it. I whispered in her ear constantly fight baby girl, you WILL leave this hospital, and you have a lot more of this world to see. This will not be where your journey ends. I tried to reason with God, begging him to bring her through this unharmed. He responded by giving me a tremendous sense of peace, a reminder that this was in His hands, not ours. I needed to be strong, and positive, because this was He and Lily's battle to win.
Once stabilized, she was transferred to the PICU, where the sickest of the sick children go. The next 24 hrs were crucial. The next day, her blood counts had improved, meaning the cocktail of FOUR antibotics (one anti viral) were doing their job. The spinal fluid results proved inconclusive, as the tap had been bloody, making it hard to read. Still, Lily-2 GBS-1. By day 2, I was able to feed her some pumped breastmilk, which she devoured! Things were turning around. I could feel her gaining strength, and I never left her side until she was finally transitioned onto a less critical floor in the hospital, where she remained for 14 days, receiving intravenous antibiotics, and gaining strength and health back with each passing day. By day 5, she was latching on and nursing again, and she has never looked back. It amazes me to think of how close we were to the unthinkable, losing our newborn child. I am writing this story, because I never, ever want anyone else to have to endure what our family did because of this deadly but preventable illness.
I had no idea that GBS could be so devastating, so quickly. Remember, newborns basically have little to no immunity, therefore their body can be overtaken within hours by this virus, with fatal effects once it has become septic, then reaches and deteriorates their organs. Looking back, there were several factors that could have played into her contracting the GBS bacteria from me during the birth process:
-My water began leaking at 5 am, she was born at 11 pm right at the 18 hr cusp of danger with GBS.
-I broke out into a fever toward the end of my labor.
-I had a fetal monitoring lead in place during labor, to make sure she was stable during the pushing. This increases risk of bacteria passing onto the baby.
-My OB checked me several times during labor for dilation, and pelvic exams increase the risk as well.
I have beat myself up over whether I should have just requested a c section because of my previous difficult labor, if I could have done something differently, trying to find the blame in myself just to have an answer. But at the end of the day, she is healthy, and although I can't understand why God would put us through that experience, I can spread the word and pray that the knowledge I share will prevent another life from being threatened or taken.
I did have 3 rounds of antibiotics during the day of my labor, but somehow, she was still infected. Why the bacteria wasn't killed in the NICU during those 3 days is still a mystery. Unfortunately, a small amount of the GBS bacteria remained, resulting in late onset GBS. Signs she showed, and any new parent should look for are as follows. If your newborn shows ANY of these signs of late onset GBS, take them to the ER immediately. Remember, minutes are critical with this disease, it is fast and rampant. We were literally within minutes of losing her. She would not be here if I had waited one more night.
Grunting (almost like a weak animal's cry, and as if they are straining)
Pale/gray skin
Fever-Unusually warm or COLD (very important to know about cold)
Stops feeding
Throwing up
Impaired consciousness
Listless or floppy body
Meningitis-specific signs: (Doctors determined Lily did have meningitis, and she exhibited most of these signs as I look back)
— Heather Nail, USA
Heather's mother makes ribbons and shares with everyone she knows; she also posts the GBS awareness logo.
As I was transitioned into our hospital room, I was overcome with anxiety, but knew I needed to get some sleep, so my husband and I squeezed in several hours, awaiting a call from the nurses in the transitional NICU. As my gut instinct had indicated, the phone rang with the news that she had been admitted into the NICU, as her bloodwork had shown a high WBC count indicating infection. The doctors administered antibiotics for 3 days, to kill whatever was growing in her tiny system. On day 3, the neonatologist ran a final culture, and gave us the good news that no infectious bacteria had grown in the past 24 hrs, with the green light to finally take our baby girl home. However, he wanted her seen the next day by her pediatrician, to be 100% certain. This was on Sunday evening.
The following afternoon (Monday), we visited our pediatrician, and he seemed a bit concerned, as she was lethargic, and her jaundice did not seem to be improving. He wanted us to watch her closely overnight, and to have a complete blood workup done the following day. By Monday night, Lily had stopped nursing, or latching onto me. She had been a pro nurser from day one, even hooked up to NICU machines, so this alarmed me. By Tuesday, she was worsening, and when bottle fed, would not latch well, and would dribble milk all over herself (trouble feeding). Her bloodwork came back that night, with increasing WBC counts, slightly over the normal newborn level. Our doctor ordered another set for the following morning. During that night, Lily totally stopped waking for feeding (lethargy), and her cry had turned weak, almost whimper like. She was listless and floppy, so the next morning, I rushed her to the clinic for her 2nd round of bloodwork. Her WBC had skyrocketed, and her 2 other results were also indicating infection. Our dr told us to go to the Children's ER immediately. I was completely floored, and felt like my world was ending. Once admitted, Lily became even more unresponsive, her breathing became strained, and she was pale and cold. Naive as I was, I knew things were deteriorating quickly, and whatever was happening was becoming more serious by the minute. The ER doctor performed a spinal tap, and after bringing her back into the room, she began seizing in my arms. The nurses grabbed her from me, and ran down the hall to the trauma room.
I felt like I was having an out of body experience. Moments later, my husband and I were summoned into the trauma room, where Lily was hooked onto a ventilator, and monitoring machines. The nurse explained the levels, and we could quickly see that her oxygen levels were poor, her heart rate was low. She stopped breathing several times, nearly coded, and had to have oxygen administered to resuscitate her. A chaplain came into the room, and said he comes in to see all families with children in the trauma room. So this is where children die, was all I could think. She was rushed in for a CT scan, as the doctor was concerned about a possible brain bleed, or infection growing in her brain. It felt like someone else I was watching from up above, 2 parents standing helpless, while a child barely out of my womb was wheeled off into her scan, to determine her fate all the while, hooked up to beeping monitors and oxygen that was helping to sustain her. The scans showed no bleeding, or infections growth on the brain. Lily-1 GBS-1. The playing field was even. I knew our girl could fight, something in me just knew it. I whispered in her ear constantly fight baby girl, you WILL leave this hospital, and you have a lot more of this world to see. This will not be where your journey ends. I tried to reason with God, begging him to bring her through this unharmed. He responded by giving me a tremendous sense of peace, a reminder that this was in His hands, not ours. I needed to be strong, and positive, because this was He and Lily's battle to win.
Once stabilized, she was transferred to the PICU, where the sickest of the sick children go. The next 24 hrs were crucial. The next day, her blood counts had improved, meaning the cocktail of FOUR antibotics (one anti viral) were doing their job. The spinal fluid results proved inconclusive, as the tap had been bloody, making it hard to read. Still, Lily-2 GBS-1. By day 2, I was able to feed her some pumped breastmilk, which she devoured! Things were turning around. I could feel her gaining strength, and I never left her side until she was finally transitioned onto a less critical floor in the hospital, where she remained for 14 days, receiving intravenous antibiotics, and gaining strength and health back with each passing day. By day 5, she was latching on and nursing again, and she has never looked back. It amazes me to think of how close we were to the unthinkable, losing our newborn child. I am writing this story, because I never, ever want anyone else to have to endure what our family did because of this deadly but preventable illness.
I had no idea that GBS could be so devastating, so quickly. Remember, newborns basically have little to no immunity, therefore their body can be overtaken within hours by this virus, with fatal effects once it has become septic, then reaches and deteriorates their organs. Looking back, there were several factors that could have played into her contracting the GBS bacteria from me during the birth process:
-My water began leaking at 5 am, she was born at 11 pm right at the 18 hr cusp of danger with GBS.
-I broke out into a fever toward the end of my labor.
-I had a fetal monitoring lead in place during labor, to make sure she was stable during the pushing. This increases risk of bacteria passing onto the baby.
-My OB checked me several times during labor for dilation, and pelvic exams increase the risk as well.
I have beat myself up over whether I should have just requested a c section because of my previous difficult labor, if I could have done something differently, trying to find the blame in myself just to have an answer. But at the end of the day, she is healthy, and although I can't understand why God would put us through that experience, I can spread the word and pray that the knowledge I share will prevent another life from being threatened or taken.
I did have 3 rounds of antibiotics during the day of my labor, but somehow, she was still infected. Why the bacteria wasn't killed in the NICU during those 3 days is still a mystery. Unfortunately, a small amount of the GBS bacteria remained, resulting in late onset GBS. Signs she showed, and any new parent should look for are as follows. If your newborn shows ANY of these signs of late onset GBS, take them to the ER immediately. Remember, minutes are critical with this disease, it is fast and rampant. We were literally within minutes of losing her. She would not be here if I had waited one more night.
Grunting (almost like a weak animal's cry, and as if they are straining)
Pale/gray skin
Fever-Unusually warm or COLD (very important to know about cold)
Stops feeding
Throwing up
Impaired consciousness
Listless or floppy body
Meningitis-specific signs: (Doctors determined Lily did have meningitis, and she exhibited most of these signs as I look back)
- High pitched cry
- Shrill moaning or whimpering
- Fever (cold hands & feet)
- Refuses to eat
- Dislikes being held
- Throwing up
- Tense or bulgy soft spot
- Body stiffening or jerking (seizures)
- Floppy body
- Blank stare or trance
- Sleeping too much
- Fast or slow breathing
- Pale, blotchy skin
— Heather Nail, USA
Heather's mother makes ribbons and shares with everyone she knows; she also posts the GBS awareness logo.
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.