Charlotte’s Journey: A Warrior Princess’s Fight Against All Odds
Our journey with Charlotte began long before she was born. At 27 weeks, we received the results of a Non-Invasive Prenatal Test (NIPT), which indicated a high risk for Trisomy 13, also known as Patau Syndrome. To confirm, we opted for amniocentesis and a fetal MRI at 30 weeks. The prognosis was grim—our doctors told us she likely wouldn’t survive the pregnancy.
Despite the odds, Charlotte was growing well during our growth ultrasound on May 16th. However, I began experiencing swelling and hypertension. The doctors advised induction, which we scheduled for May 24th. When we arrived at the hospital, it felt like a revolving door of doctors and fellows. One told us Charlotte wouldn’t make it to the delivery table, while others predicted we’d only have a few hours with her.
On May 25th, at 1:19 a.m., Charlotte made her grand entrance. Weighing 6 pounds and 6 ounces, she was breathing on her own and crying—a sound we’ll never forget. They placed her on my chest, and Christopher cut what remained of her fragile, disintegrating umbilical cord.
After a few precious moments, Charlotte was taken to the NICU, where she was examined by a pediatric surgeon due to a small, tightly bound omphalocele. Once I was able to move, Christopher brought me to the NICU. The surgeon recommended immediate repair of her omphalocele, and we agreed.
This decision marked the beginning of a challenging journey. A conflict arose between Charlotte’s neonatal team and the surgical team. The neonatal team delayed the operating room (OR) preparation, insisting she wouldn’t make it. Determined to proceed, the surgical team took over and successfully repaired her omphalocele. It was a victory, but sadly, the last significant one at her birth hospital.
What followed was a series of heartbreaking setbacks. Charlotte’s neonatal team made critical mistakes, including a medication overdose that left her critically ill. They attributed her condition to Trisomy 13, urging us to switch to comfort care. Worse still, they listed her as DNR (Do Not Resuscitate) and DNI (Do Not Intubate) without our consent, withheld nutrition for hours and days, and dismissed our questions and requests for interventions.
We refused to give up on our warrior princess. Desperate for answers, we reached out to a compassionate doctor in another state who advocates for children like Charlotte. He agreed to be her formal second-opinion physician and helped us connect with another expert who supported our pursuit of an airway intervention.
The battle to transfer Charlotte to a better facility began. On July 1st, she was flown to Michigan, where she received a tracheostomy. Her surgeon, a dedicated professional, performed the procedure the day before attending the SOFT conference as an expert panelist. Charlotte’s surgery was a success, and she spent the next week and a half recovering in Michigan.
On July 24th, Charlotte was transferred to St. Vincent’s Women’s Hospital NICU in Indiana—a stark contrast to her birth hospital. Here, she has thrived. She received a G-tube and has made incredible progress in physical and occupational therapy. She’s on CPAP mode on her machines and now weighs over 13 pounds. Her resilience is nothing short of miraculous.
Charlotte’s estimated discharge date is October 8th, and we couldn’t be prouder of our warrior princess. Her journey is a testament to the power of advocacy, perseverance, and hope. Through every obstacle, she has shown us what it means to fight—and win.
Written by Charlotte’s mom
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