Saylor Schlei

My beautiful daughter, Saylor was born on October 7, 2023. Though I arrived at the hospital almost 10 cm dilated and had to give birth to her without epidural, my delivery was successful, and we were discharged from the hospital the very next day. For almost 2 weeks, everything was normal. Saylor loved to smile, and cuddle, and enjoyed her baths and tummy time.

It wasn’t until the night of Tuesday, October 24th that I began to get concerned. Saylor slept off and on for most of that day, but she was her normal self when she was awake. 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. By the time the sun started to set, I noticed that Saylor was still asleep. By now, 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 her behavior was different. She barely cried. This was not like 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 with a blank expression 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 for a feeding. 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. My husband and I discussed what to do next, but my gut told me that this was not normal, and something was seriously wrong with Saylor.

It took me 20 minutes to get to the nearest Children’s Hospital. 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.

There were over a dozen medical staff attending to Saylor, yelling to-dos at each other, and trying to get her stable. 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. 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. (Sepsis and Group B Streptococcus, Sepsis and Meningitis)

I will never forget the moment the ICU doctor 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 Houston, TX, as they had better resources to care for her brain injuries. There the PICU medical staff did all they could for Saylor and fought to keep her alive. It became evident that nothing could be fixed for the damage that was already done, but the goal was to prevent any more stroke or other damage to be done.

For two unbearable weeks, we stayed by Saylor’s side as she fought through over 100 seizures, massive brain swelling and kidney issues. 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.

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 a haunting memory that will never leave my mind. In less than a month, I went from giving birth to a seemingly healthy baby girl, to losing her to a wicked disease. GBS, meningitis and sepsis completely ravaged her body. All that remains is the two weeks’ worth of memories, photos, and videos of her before this terrible disease took over her little body.

Source: Dura Schlei, mother