Scarlett’s Story

Our beautiful daughter Scarlett was 17 months old when she became ill from Shiga Toxin Producing E.coli (STEC). On the evening of June 10, 2022, the first symptoms to appear were bloody diarrhea followed by being lethargic. Every hour we had to change Scarlett’s diaper which was filled with blood and diarrhea. We called the pediatrician and she said to come in first thing in the morning. Six days earlier Scarlett had contact with a baby goat for several hours. We firmly believe this was the source of her E.coli 0157:H7 infection.

Saturday June 11th, we took Scarlett to her pediatrician. She suspected Scarlett may have a Salmonella infection so she prescribed an antibiotic. Fortunately Scarlett vomited shortly after giving it to her. Antibiotics can make an E.coli infection worse. The pediatrician also arranged for us to be admitted to the hospital where an I.V. was started and a stool sample was taken for testing.
Sunday June 12th, it was confirmed that Scarlett had an E.coli 0157:H7 infection. Being hospitalized was like being on a terrible carnival ride that wouldn’t end. Things just kept getting worse and communication was terrible and slow. When we were told that Scarlett had developed Hemolytic Uremic Syndrome (HUS), the Dr. said that they only see one or two cases a year. Sadly, there was no discussion about a treatment plan or what the possible outcome may be. They moved us to a room in the pediatric intensive care unit (PICU) and they attempted to get Scarlett to pee using a medication. It didn’t work and we quickly believed we needed to be sent to a different hospital and began asking for a transfer.

Monday June 13th, we were air lifted to a hospital in New Orleans where the PICU team began to prepare Scarlett for dialysis. We didn’t know what was required to start it, but it took forever. Scarlett needed a surgery to place a dialysis catheter, but since her heart rate was in the 200’s, they did and EKG first to make sure she could handle the surgery. We got there around 10:00 a.m. and Scarlett didn’t start dialysis until nearly midnight. Things got worse overnight as the dialysis machine failed 3 times. They weren’t able to remove any fluids and her heart rate was still very high with low blood pressure.

Tuesday June 14th, at 7:25 a.m., Scarlett coded. The next two hours and 36 minutes were the longest minutes of our lives. They performed continuous CPR, giving 42 doses of EPI. As we sat in the room feeling completely helpless, the chaplain came and consoled us. We listened as the doctor said, “We need to think about calling this”, meaning time of death. The nurses said no and kept working. They called in surgeons who were still at home to perform emergency surgery to get her on ECMO (a heart-lung machine). We watched as they shoved a huge needle into her side to pull off fluid. All the sights and sounds, everything is seared into our brains forever. We were finally forced to leave the room just before they began to operate. We waited in the room next door.
After an unknown amount of time passed the two surgeons came and spoke with us. They looked defeated. No one could even make eye contact with us. They said there was maybe a one percent chance of survival, but that as of right now she is alive. Scarlett remained on ECMO for 8 days. We were told there may be brain damage and an MRI would be needed to determine the extent of the damage.
Those days were hard and we had limited access to her due to a COVID concern. We could only see Scarlett for a few minutes a day and received updates from the nurse. The night she came off ECMO was the first time we were able to remain in the room with her. Thank goodness we were there as the team miscalculated her fluids and Scarlett nearly coded again. When she was stable enough, they took her for an MRI. The results showed Anoxic Brain Damage. The outlook was grim: never walk, never talk, no quality of life, with not much hope. We were devastated!

Around 18 days into the hospitalization, they began to speak with us about end of life care and wanted to place Scarlett on hospice. The nephrologist wouldn’t continue dialysis beyond 30 days if Scarlett was not peeing and the other doctors painted a bleak picture of the future almost urging us to end Scarlett’s life. We chose to keep Scarlett alive but did write a DNR. It was a heart wrenching position for us as parents to be placed in.
Scarlett experienced many complications and procedures during the fight for her life. Along with having a stroke, cardiac arrest and GI tract failure, she received countless blood, plasma and platelet transfusions, along with two doses of a drug called Solaris. She endured 25 days of kidney dialysis, was placed on a ventilator, and had chest tubes, NG tube, G-tube, and PICC line.
A week later there was little improvement and the end-of-life conversation was revisited. We begged for a transfer! On July 7th, we were transferred Children’s Hospital of New Orleans. A miracle began to happen. Scarlett began to recover. On July 8th, she peed for the first time after being in acute kidney failure for close to a month.

During the 40+ days at Children’s, Scarlett improved each day. Once she was weaned off of her sedation medication and she started waking up, her sporadic movements became controlled. She was still paralyzed on her left side, but that changed when they removed the dialysis port. It wasn’t all great. Scarlett had surgery to have a G-tube placed. She had challenges with feeding due to an oral aversion and over time had to learn how to eat again. Despite all odds, on August 25th, Scarlett talked and walked right out the hospital front door. This was the happiest day of our lives!
Being back at home was surprisingly strange. Life was simple in the hospital and we had adjusted to it. We had a huge support group. The nurses did most of Scarlett’s care. When we got home, typical life returned and we struggled. John had to return to work, our support system returned to their normal lives, and Brenna bared the burden of caring for a child that had medical complications. We chose to home blend her food versus formula. We fed her via her G-tube upwards of 20 times a day in small doses until she could handle larger doses. Brenna took Scarlett to 14 weekly therapy appointments, working around household duties and caring for Scarlett’s big sister Stella. Life was more than chaotic.

We do count our blessings. We are lucky to only have the challenge of the g-tube as things could have been much worse! However, our normal would be considered crazy to most other parents. Caring for a G-tube has its challenges and we couldn’t go anywhere without an emergency tube, all the supplies and food. Life was, and frankly, still is hard.
Two year later, Scarlett is kicking ass and defying all the odds!!!! Scarlett’s kidneys operate at 70% which is stage 2 kidney disease. Over the last year she has completely weaned off of the G-tube for eating. We still use it for fluids as she aspirates due to her right vocal cord being paralyzed. She walks and talks and loves to do all the fun things a typical 3-year old would do. She flies down the street on her scooter, barks like a puppy and has the greatest laugh. She loves to terrorize her big sister and is so sweet to her babies. She still has a few therapies but at this moment she’s an amazing miracle capable of doing anything!