|
SAYLOR — USA
Lived October 7, 2023 - November 6, 2023 Late-onset Mother's GBS Status: Tested Positive Gestational Age: 38 weeks Age harmed: 2 weeks old |
To start Saylor’s story, I need to begin on June 16, 2022 – over 16 months prior to Saylor being born. At that time, my husband, Barrett, and I were expecting our first child, our son, Spencer. At 34 weeks pregnant, my OB tested me for Group B Streptococcus (GBS). I had no clue what GBS was before getting tested in 2022. Even when it was explained to me, I felt as if it was glossed over in a very nonchalant way. I remember being told that it was a bacterium that lay within the genital tract and that it is very common in pregnant women to test positive. I was also told that there was nothing to fear because GBS is not typically harmful in adults, but it can be harmful for newborns, which is why pregnant women are given antibiotics when admitted for delivery to prevent the bacteria from going to the newborn; penicillin being the drug of choice. The way my doctor communicated GBS to me and what would be done to prevent Spencer from developing it gave me a sense of relief and I forgot about it. If all it took was a simple antibiotic to prevent any complications with Spencer, I knew everything would be okay. In Spencer’s case, everything did turn out to be okay. During my labor with him, I was given 2 continuous doses of penicillin. I ended up laboring for over six hours with him. Spencer was successfully delivered vaginally right at 40 weeks.
In May of 2023, 9 months after I had given birth to Spencer, my husband and I found out we were unexpectedly expecting another child. When I went to see my OB, we were shocked to find out that I was already 18 weeks pregnant. When we found out it was a girl, we were excited. Regardless of the gender we would have been happy, but we both knew we wanted to stop after two kids, and having a boy and girl would be the best of both worlds for us. We discussed names and landed on the name Saylor Elizabeth, which means Dancing Child of God.
Due to me finding out so late in my pregnancy about Saylor and to ensure everything was okay with her, I was referred to a high-risk doctor. After a few visits, Saylor was diagnosed with fetal growth restriction. She was not gaining enough weight for her gestational age. I made some tweaks to my diet and at 34 weeks, I was told that her weight was now in the normal range and that there was no need for me to be induced.
That same week, my OB tested me for GBS. I was positive. I had forgotten all about GBS, but later remembered that I was positive the prior year with Spencer, and that I was given antibiotics during labor, and HOW everything turned out wonderful.
Two days before I turned 38 weeks, my OB conducted a Membrane Sweep. Although painful, I had this done during my last pregnancy and had success, and figured I would do it again with this pregnancy. Exactly at 38 weeks pregnant, in the early morning hours of October 7, 2023, my husband rushed me to hospital due to painful contractions. When we arrived at the emergency room, I was told I was a little over 9cm dilated and was rushed into a room for delivery. As I was put on a stretcher, I distinctly remember one of the nurses asking me if I knew what my Group B Strep status was as there was a technical delay in trying to pull up my lab records from my OB. I remember screaming, “Yes, yes…I’m positive” right in the middle of a contraction. When I asked for the epidural, I will never forget what one of the sweet nurses said to me. “Oh sweetheart, you’re about to have this baby. You’re now fully dilated. It’s time to start pushing”. At that point fear consumed me. I was a planner, and having a natural birth was not a part of my birth plan. But I had no choice but to push without anesthesia. A little over 30 minutes later. Saylor was born into the world. I was so proud of myself for having a natural birth, even though it wasn’t my preferred choice. Saylor was beautiful and perfect in every way. Her big brown eyes pierced my soul. After her delivery, I remember one of the nurses looked up at the penicillin bag and said to me, “Oh, good job mom. We were able to get you through one bag of penicillin”. It’s amazing how one simple statement can linger with you long after. That statement now plays repeatedly in my head.
After Saylor’s birth, while in recovery, a nurse came into our room to let us know that they would be monitoring Saylor for the first night for any signs of fever, lethargy or trouble eating. Saylor did great. She ate well, was fully alert when she was awake, and passed all her standard newborn tests. There were no signs of trouble on the horizon.
Saylor and I were discharged the next day and for almost 2 weeks, everything was normal. Saylor loved to smile, and cuddle, and enjoyed her baths and tummy time. The only thing that stood out to me and my husband at the time was that Saylor slept a lot and would only spend 2 to 3 hours of the day awake. We dismissed this as normal behavior for a newborn. It wasn’t until the night of Tuesday, October 24ththat I began to get concerned. Saylor slept on and off most of that day, but she was her normal self. We had made errands with her, and she had a few feedings. When we returned home from making errands, she was asleep in her car seat and my husband decided to nap with her. The sun was starting to set, and I noticed that Saylor was still asleep. She had slept for more than 6 hours without a bottle. I noticed she needed a diaper change and tried to change her first. She slowly woke up to me changing her, but she was different. She barely cried. This was not like her. Usually, she would cry whenever I wiped her with a baby wipe. After I changed her, I tried to bottle feed her and the nipple would just sit on her tongue, and milk spilled out of her mouth. She refused to suck. Her eyes were also shifting and at times she would just stare blankly for long periods. At first, I thought it was the bottle and switched it out, but she still would not feed. I then chalked it up to her just being full and just cuddled her so that she could sleep some more. I would go on to wake her up several times throughout the night to feed. Again, the nipple would just sit on her tongue. She would also cry sporadically through the night, but her cries seemed different. I couldn’t put my finger on how it was different, it just seemed off from her normal cries. When I would try to give her a pacifier again to comfort her, she would not open her mouth to suck. She seemed very lethargic, almost as if she was on some kind of drug. Her eyes would shift all over the place and her skin started to look pale. Her breathing now seemed abnormal. I checked her temperature, but it came back normal. Around 4am I contemplated what to do, Saylor had an appointment scheduled with her PCP for her 2-week checkup at 11am that day. Should I wait until then to see what was wrong? My husband and I discussed what to do next, but my gut told me that this was not normal and that Saylor could not wait for her appointment. We decided to take Saylor to a nearby urgent care clinic. At the time, I thought, they would figure out what’s wrong with Saylor, they’ll give her some antibiotics, she will go home and be back to her normal self in no time. I wish that’s how it went. Little did I know our nightmare was just beginning.
When we arrived at the 24-hour Urgent Care, the doctor took one look at Saylor and said, she is very sick. We can’t help her here. She needs to go to the Children’s Hospital. Their equipment is more suitable for older children and adults. Not 2-week-olds. We were recommended to go to Texas Children’s Hospital Woodlands campus as it was the closest children’s hospital to us. I was also told to continue to stimulate her and to not let her go to sleep. It took me 20 minutes to get to Texas Children’s Hospital in The Woodlands. It felt like an eternity. When I arrived at the ER with Saylor in her car seat and sat her on the patient check-in counter to fill out some paperwork, a staff member took one look at Saylor and started shouting, “She’s not breathing.” She started talking in medical terms I couldn’t understand regarding apneic breathing and how many minutes in between breaths she was doing. My body went numb and my whole world stopped at that moment. In the middle of the hospital lobby area, I broke down in tears. The staff member grabbed the car seat with Saylor in it and ran into another room with her. I believe somewhere in the chaos someone told me to finish filling out the form and that she was in good hands. My hands were trembling, and I could not think. I had just heard that Saylor was not breathing. How could this be happening? She was just fine hours ago. Soon, I was brought into the room they took her to. There were over a dozen medical staff attending to Saylor, yelling to-dos at each other, and trying to get her stable. A nurse pulled me aside to ask me questions. When did I give birth? How many weeks was she at birth? Was it c-section or vaginal? Any known allergies? Did she fall or was she hit with something recently? How did she seem prior to getting to the ER? Numerous medical staff asked me these questions over the next three hours, as they tried to get her stable. After she was sedated and intubated, I found out that she had stopped breathing and had to be resuscitated twice. A few hours later, a doctor came in and told us that they believed it was a bacterial infection that had caused her to be severely ill, but they needed to run a series of tests to determine which one it was. The wait for answers was excruciating. Social Workers, Chaplains, and other staff members spoke with me to calm me down. I felt like my husband, and I answered the same questions over a dozen times. All I could do was replay the last few hours in my head. Saylor was just fine the day before. Did she contract something? We hadn’t taken her out in public, but when we did, she always stayed in her car seat, and we didn’t really let other people touch her. Did she contract a virus from someone else?
Group B Strep was not brought up by the medical staff until I mentioned it. Once she was stable, I informed the ICU doctor on call that I had tested positive for GBS, but that I had been given penicillin before Saylor’s arrival. The doctor gave me a weird look. It’s a look I will never forget. It was as if at that moment, she knew based on Saylor’s symptoms and what I had just shared with her, what the likely outcome would be. The doctor stated that it could be late-onset GBS. Late-onset GBS? I had no idea what that was. Was it a different version of GBS? A few minutes later I overheard the doctor asking a staff member to see about getting Saylor’s medical records from the hospital where I gave birth. After a series of tests late-onset GBS was confirmed, along with Septic Shock and Meningitis. GBS has taken over Saylor’s entire bloodstream and was also present in her lungs and urine.
I will never forget the moment the ICU doctor at Texas Children’s Hospital came up to me and said the words that I feared the most. Saylor’s CT scan revealed that she had extensive brain damage. She had multiple strokes and brain bleeding. Blood clots had also formed in her brain. She was not able to breathe normally on her own so now a ventilator was put in place to take over her breathing. The doctor was blunt in his assessment of Saylor. If she survived this, she was never a normal child. She would not be able to walk, talk, or possibly breathe or eat on her own without assistance. It was also communicated to us that based on her MRI scan, should she survive, she would be blind and paralyzed.
Saylor was immediately transferred to Texas Children’s Hospital in the Houston Medical Center, as they had better resources to care for her brain injuries. There the PICU staff, infectious disease team, neurologists, neurosurgeons, radiologists, and respiratory therapists did all they could for Saylor and fought to keep her alive. The medical staff discussed how to proceed with Saylor’s brain injuries. It became evident that nothing could be fixed for the damage that was already done, but the goal was the prevent any more stroke or other damage to be done. Blood thinners were brought up as an option by the neurologists, but this was not an option that seemed reasonable to us. Due to Saylor having both blood clots and extensive brain bleeding. Blood thinners would have likely caused her to bleed out during surgery. The only other option was to wait it out and see what would happen with the brain swelling in hopes that her brain stem would not be affected.
For two weeks, we stayed by Saylor’s side as she fought through multiple seizures, massive brain swelling and kidney issues. I was repeatedly asked if I needed assistance, as I had just had a baby 2 weeks prior and was still recovering. It hadn’t even occurred to me that on top of my daughter fighting for her life, my body was still recovering from having her. However, I did not care about myself; all I could think about was my daughter. The amount of antibiotics and pain medication she was on was beyond belief. She also suffered an IV infiltration. Unfortunately, the extent of her brain injuries was too traumatic. The left side of her brain had little to no brain activity, the right side of her brain was damaged, and her brain had shrunk due to lack of oxygen. Not knowing what the next day would bring, my husband and I decided to have Saylor baptized. On short notice, we gathered our close family in her hospital room and had one of my good friends baptize her. I am grateful for that moment.
On November 6, 2023, just one day before her one-month milestone, our sweet Saylor was removed from life support. The look on her face as she took her last breaths is an image that will never leave my mind. No parent should have to endure that. We have lost our precious daughter and our son has lost his baby sister. This has been an absolute nightmare. We were later informed by multiple doctors that penicillin does not prevent late-onset GBS, only early-onset GBS, and that there is currently no known cure for this rare disorder. In less than a month, I went from giving birth to a seemingly healthy baby girl, to losing her to a wicked disease. GBS completely ravaged her body. I should be enjoying my maternity leave, but instead, I painfully plan a memorial service for my daughter. I am in total disbelief thinking that at any minute, I will wake up and things will be back to normal. All that remains is the two weeks’ worth of memories, photos, and videos of her before this terrible disease took over her little body. A part of me feels as though this is my fault. If I had never gotten GBS, Saylor would have never contracted it. Saylor did not deserve this sort of fate. No child does. I also wish my doctors would have been upfront with me regarding the extent of GBS. Even if late onset GBS is rare, every parent deserves to be armed with the necessary information to understand what to look out for.
If I could turn back time, I would have asked more questions and done more research. I share Saylor’s story, not to garner sympathy, but with the hope that Saylor's story can educate others on the dangers of not just early-onset GBS, but late-onset GBS as well. This disease has taken my innocent and precious baby girl. I would not wish this pain on anyone.
-Dura
Spreads awareness through active GBS awareness sites, events and to anyone who will listen to Saylor's story.
In May of 2023, 9 months after I had given birth to Spencer, my husband and I found out we were unexpectedly expecting another child. When I went to see my OB, we were shocked to find out that I was already 18 weeks pregnant. When we found out it was a girl, we were excited. Regardless of the gender we would have been happy, but we both knew we wanted to stop after two kids, and having a boy and girl would be the best of both worlds for us. We discussed names and landed on the name Saylor Elizabeth, which means Dancing Child of God.
Due to me finding out so late in my pregnancy about Saylor and to ensure everything was okay with her, I was referred to a high-risk doctor. After a few visits, Saylor was diagnosed with fetal growth restriction. She was not gaining enough weight for her gestational age. I made some tweaks to my diet and at 34 weeks, I was told that her weight was now in the normal range and that there was no need for me to be induced.
That same week, my OB tested me for GBS. I was positive. I had forgotten all about GBS, but later remembered that I was positive the prior year with Spencer, and that I was given antibiotics during labor, and HOW everything turned out wonderful.
Two days before I turned 38 weeks, my OB conducted a Membrane Sweep. Although painful, I had this done during my last pregnancy and had success, and figured I would do it again with this pregnancy. Exactly at 38 weeks pregnant, in the early morning hours of October 7, 2023, my husband rushed me to hospital due to painful contractions. When we arrived at the emergency room, I was told I was a little over 9cm dilated and was rushed into a room for delivery. As I was put on a stretcher, I distinctly remember one of the nurses asking me if I knew what my Group B Strep status was as there was a technical delay in trying to pull up my lab records from my OB. I remember screaming, “Yes, yes…I’m positive” right in the middle of a contraction. When I asked for the epidural, I will never forget what one of the sweet nurses said to me. “Oh sweetheart, you’re about to have this baby. You’re now fully dilated. It’s time to start pushing”. At that point fear consumed me. I was a planner, and having a natural birth was not a part of my birth plan. But I had no choice but to push without anesthesia. A little over 30 minutes later. Saylor was born into the world. I was so proud of myself for having a natural birth, even though it wasn’t my preferred choice. Saylor was beautiful and perfect in every way. Her big brown eyes pierced my soul. After her delivery, I remember one of the nurses looked up at the penicillin bag and said to me, “Oh, good job mom. We were able to get you through one bag of penicillin”. It’s amazing how one simple statement can linger with you long after. That statement now plays repeatedly in my head.
After Saylor’s birth, while in recovery, a nurse came into our room to let us know that they would be monitoring Saylor for the first night for any signs of fever, lethargy or trouble eating. Saylor did great. She ate well, was fully alert when she was awake, and passed all her standard newborn tests. There were no signs of trouble on the horizon.
Saylor and I were discharged the next day and for almost 2 weeks, everything was normal. Saylor loved to smile, and cuddle, and enjoyed her baths and tummy time. The only thing that stood out to me and my husband at the time was that Saylor slept a lot and would only spend 2 to 3 hours of the day awake. We dismissed this as normal behavior for a newborn. It wasn’t until the night of Tuesday, October 24ththat I began to get concerned. Saylor slept on and off most of that day, but she was her normal self. We had made errands with her, and she had a few feedings. When we returned home from making errands, she was asleep in her car seat and my husband decided to nap with her. The sun was starting to set, and I noticed that Saylor was still asleep. She had slept for more than 6 hours without a bottle. I noticed she needed a diaper change and tried to change her first. She slowly woke up to me changing her, but she was different. She barely cried. This was not like her. Usually, she would cry whenever I wiped her with a baby wipe. After I changed her, I tried to bottle feed her and the nipple would just sit on her tongue, and milk spilled out of her mouth. She refused to suck. Her eyes were also shifting and at times she would just stare blankly for long periods. At first, I thought it was the bottle and switched it out, but she still would not feed. I then chalked it up to her just being full and just cuddled her so that she could sleep some more. I would go on to wake her up several times throughout the night to feed. Again, the nipple would just sit on her tongue. She would also cry sporadically through the night, but her cries seemed different. I couldn’t put my finger on how it was different, it just seemed off from her normal cries. When I would try to give her a pacifier again to comfort her, she would not open her mouth to suck. She seemed very lethargic, almost as if she was on some kind of drug. Her eyes would shift all over the place and her skin started to look pale. Her breathing now seemed abnormal. I checked her temperature, but it came back normal. Around 4am I contemplated what to do, Saylor had an appointment scheduled with her PCP for her 2-week checkup at 11am that day. Should I wait until then to see what was wrong? My husband and I discussed what to do next, but my gut told me that this was not normal and that Saylor could not wait for her appointment. We decided to take Saylor to a nearby urgent care clinic. At the time, I thought, they would figure out what’s wrong with Saylor, they’ll give her some antibiotics, she will go home and be back to her normal self in no time. I wish that’s how it went. Little did I know our nightmare was just beginning.
When we arrived at the 24-hour Urgent Care, the doctor took one look at Saylor and said, she is very sick. We can’t help her here. She needs to go to the Children’s Hospital. Their equipment is more suitable for older children and adults. Not 2-week-olds. We were recommended to go to Texas Children’s Hospital Woodlands campus as it was the closest children’s hospital to us. I was also told to continue to stimulate her and to not let her go to sleep. It took me 20 minutes to get to Texas Children’s Hospital in The Woodlands. It felt like an eternity. When I arrived at the ER with Saylor in her car seat and sat her on the patient check-in counter to fill out some paperwork, a staff member took one look at Saylor and started shouting, “She’s not breathing.” She started talking in medical terms I couldn’t understand regarding apneic breathing and how many minutes in between breaths she was doing. My body went numb and my whole world stopped at that moment. In the middle of the hospital lobby area, I broke down in tears. The staff member grabbed the car seat with Saylor in it and ran into another room with her. I believe somewhere in the chaos someone told me to finish filling out the form and that she was in good hands. My hands were trembling, and I could not think. I had just heard that Saylor was not breathing. How could this be happening? She was just fine hours ago. Soon, I was brought into the room they took her to. There were over a dozen medical staff attending to Saylor, yelling to-dos at each other, and trying to get her stable. A nurse pulled me aside to ask me questions. When did I give birth? How many weeks was she at birth? Was it c-section or vaginal? Any known allergies? Did she fall or was she hit with something recently? How did she seem prior to getting to the ER? Numerous medical staff asked me these questions over the next three hours, as they tried to get her stable. After she was sedated and intubated, I found out that she had stopped breathing and had to be resuscitated twice. A few hours later, a doctor came in and told us that they believed it was a bacterial infection that had caused her to be severely ill, but they needed to run a series of tests to determine which one it was. The wait for answers was excruciating. Social Workers, Chaplains, and other staff members spoke with me to calm me down. I felt like my husband, and I answered the same questions over a dozen times. All I could do was replay the last few hours in my head. Saylor was just fine the day before. Did she contract something? We hadn’t taken her out in public, but when we did, she always stayed in her car seat, and we didn’t really let other people touch her. Did she contract a virus from someone else?
Group B Strep was not brought up by the medical staff until I mentioned it. Once she was stable, I informed the ICU doctor on call that I had tested positive for GBS, but that I had been given penicillin before Saylor’s arrival. The doctor gave me a weird look. It’s a look I will never forget. It was as if at that moment, she knew based on Saylor’s symptoms and what I had just shared with her, what the likely outcome would be. The doctor stated that it could be late-onset GBS. Late-onset GBS? I had no idea what that was. Was it a different version of GBS? A few minutes later I overheard the doctor asking a staff member to see about getting Saylor’s medical records from the hospital where I gave birth. After a series of tests late-onset GBS was confirmed, along with Septic Shock and Meningitis. GBS has taken over Saylor’s entire bloodstream and was also present in her lungs and urine.
I will never forget the moment the ICU doctor at Texas Children’s Hospital came up to me and said the words that I feared the most. Saylor’s CT scan revealed that she had extensive brain damage. She had multiple strokes and brain bleeding. Blood clots had also formed in her brain. She was not able to breathe normally on her own so now a ventilator was put in place to take over her breathing. The doctor was blunt in his assessment of Saylor. If she survived this, she was never a normal child. She would not be able to walk, talk, or possibly breathe or eat on her own without assistance. It was also communicated to us that based on her MRI scan, should she survive, she would be blind and paralyzed.
Saylor was immediately transferred to Texas Children’s Hospital in the Houston Medical Center, as they had better resources to care for her brain injuries. There the PICU staff, infectious disease team, neurologists, neurosurgeons, radiologists, and respiratory therapists did all they could for Saylor and fought to keep her alive. The medical staff discussed how to proceed with Saylor’s brain injuries. It became evident that nothing could be fixed for the damage that was already done, but the goal was the prevent any more stroke or other damage to be done. Blood thinners were brought up as an option by the neurologists, but this was not an option that seemed reasonable to us. Due to Saylor having both blood clots and extensive brain bleeding. Blood thinners would have likely caused her to bleed out during surgery. The only other option was to wait it out and see what would happen with the brain swelling in hopes that her brain stem would not be affected.
For two weeks, we stayed by Saylor’s side as she fought through multiple seizures, massive brain swelling and kidney issues. I was repeatedly asked if I needed assistance, as I had just had a baby 2 weeks prior and was still recovering. It hadn’t even occurred to me that on top of my daughter fighting for her life, my body was still recovering from having her. However, I did not care about myself; all I could think about was my daughter. The amount of antibiotics and pain medication she was on was beyond belief. She also suffered an IV infiltration. Unfortunately, the extent of her brain injuries was too traumatic. The left side of her brain had little to no brain activity, the right side of her brain was damaged, and her brain had shrunk due to lack of oxygen. Not knowing what the next day would bring, my husband and I decided to have Saylor baptized. On short notice, we gathered our close family in her hospital room and had one of my good friends baptize her. I am grateful for that moment.
On November 6, 2023, just one day before her one-month milestone, our sweet Saylor was removed from life support. The look on her face as she took her last breaths is an image that will never leave my mind. No parent should have to endure that. We have lost our precious daughter and our son has lost his baby sister. This has been an absolute nightmare. We were later informed by multiple doctors that penicillin does not prevent late-onset GBS, only early-onset GBS, and that there is currently no known cure for this rare disorder. In less than a month, I went from giving birth to a seemingly healthy baby girl, to losing her to a wicked disease. GBS completely ravaged her body. I should be enjoying my maternity leave, but instead, I painfully plan a memorial service for my daughter. I am in total disbelief thinking that at any minute, I will wake up and things will be back to normal. All that remains is the two weeks’ worth of memories, photos, and videos of her before this terrible disease took over her little body. A part of me feels as though this is my fault. If I had never gotten GBS, Saylor would have never contracted it. Saylor did not deserve this sort of fate. No child does. I also wish my doctors would have been upfront with me regarding the extent of GBS. Even if late onset GBS is rare, every parent deserves to be armed with the necessary information to understand what to look out for.
If I could turn back time, I would have asked more questions and done more research. I share Saylor’s story, not to garner sympathy, but with the hope that Saylor's story can educate others on the dangers of not just early-onset GBS, but late-onset GBS as well. This disease has taken my innocent and precious baby girl. I would not wish this pain on anyone.
-Dura
Spreads awareness through active GBS awareness sites, events and to anyone who will listen to Saylor's story.
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.