Baylor’s story begins when a mass in her abdomen was found at her mother’s routine anatomy scan Further testing fell short, the doctors couldn’t identify where the mass originated but they assumed it was a benign ovarian cyst. Over time the cyst began to grow.
At 39 weeks Baylor’s mom went to the hospital to give birth. Complications arose when Baylor’s heart rate decelerated. It was determined that the umbilical cord was around her Baylor’s neck. Despite the scare, delivery went quickly and smoothly and Beautiful Baylor entered the world.
Baylor latched on to breastfeed well but each time that she was fed, she fussed or fell asleep. Baylor was offered formula but she refused everything. She started to spit up green-colored liquid. As a nurse already a mother of 2 other children, Baylor’s mother knew it wasn’t normal, however, Baylor’s nurse reported that everything was ok. Baylor continued to spit up and it got progressively darker green and the volume was increasing in amount. Baylor’s mother saved every blanket, outfit, burp cloth that she spit up on.
Finally, on the second day, a night nursery nurse took Baylor’s mother’s concerns seriously and called the on-call pediatrician. It was planned to do some diagnostic testing in the morning. In the meantime, Baylor’s condition continued to decline so the decision was made to transfer her to the closest regional NICU and do further diagnostic testing.
Baylor took her first ride in an ambulance at 2.5 days old. Baylor’s mother was discharged and determined to be with her baby. They did an ultrasound within hours and then an upper GI series.
The pediatric surgeon consulting case told the family that Baylor’s “ovarian cyst” was actually an enteric duplication cyst. The doctor thought that the cyst was causing her issues as the vomiting had slowed and Baylor seemed stable. The surgeon suggested planning to wait until Baylor was 6-12 months to remove the cyst. Despite this advice, Baylor’s mother’s gut told her that Baylor needed surgery, now. She voiced her concern about waiting on surgery and a nurse reviewed imaging with Baylor’s mother, hoping that it would ease concerns, but it didn’t. Baylor’s mother knew that Baylor needed imminent surgery.
The next morning the doctor repeated a GI series. The doctor called Baylor’s parents to share that he saw that the cyst was causing bowel twisting and that it needed to be removed as soon as possible. Baylor had her first surgery a few hours later and the surgery team was so taken by the size of the cyst that they brought it up to show the NICU staff, it was the size of a baseball.
Baylor stayed in the NICU on gut rest for several more days before they let her try oral feedings again. She tolerated them well and came home 13 days after she was born.
After coming home, she continued to be fussy. She never slept more than a couple hours. Baylor’s mom tried changing her diet and eliminating things as she was breastfeeding but ultimately Baylor was unhappy and seemed in pain.
Weeks passed and Baylor’s mother returned to work on a short holiday week. She believes that it was God’s providence that the week was short and she was home as Baylor became fussy, then started vomiting. She became pale and lethargic and declined rapidly. At this time, Baylor’s mom knew that she needed to go to the hospital and she was terrified. She feared that Baylor wasn’t going to survive. Baylor was driven to the nearest hospital and upon arrival, the nurses were extremely concerned by Baylor’s status. Despite being stuck several times, Baylor didn’t react. Her blood sugar was well over 300 and her little body was nearly lifeless. She was stabilized after IV fluids and a dose of insulin to prepare her for an ambulance ride to the nearest NICU.
More testing took place and Baylor began vomiting, the vomit was green…again. Baylor’s parents knew something was very wrong with their daughter. Baylor received a CT and revealed a volvulus. Baylor was admitted to the hospital and surgery was planned for the next morning. Against the odds, Baylor pulled through the night and in the morning surgery revealed that Baylor’s bowels were malrotated and that she experienced volvulus. Baylor was officially diagnosed then at 7 weeks old and had Ladd’s procedure to remediate.
After surgery, Baylor grew and gained beautifully- thriving on her mother’s milk. Baylor continues to have some gastrointestinal issues that are currently being explored but her family is beyond thankful that she survived and lives to tell her story of HOPE.
