By Charlotte’s Parents, Katy & Scott
Charlotte was born on Friday, April 20th, 2018. In order to introduce you to her it feels pertinent to tell the story of how we met her. On Thursday, April 19th, Charlotte’s mom, Katy, was 32 weeks pregnant with our 3rd child and scheduled for an ultra-sound with no sign or thought of issues with the baby. During the visit, an ultrasound showed several abnormalities and concerns. The scan showed one side of baby’s heart was too small, a significantly high level of amniotic fluid, and there was (what they thought) a large rapidly growing mast on the baby’s ovary. At this time we got the news we were having a baby girl and that there were serious health concerns. We were immediately scheduled for additional ultrasounds the next morning with the Maternal Fetal Medicine team. After several hours of follow-up ultrasound and cardiology appts, the medical team was still unsure what was causing the abnormalities and rapidly growing mast. However, the team agreed that Katy needed to be admitted into Prentice Women’s Hospital for additional monitoring. Once admitted, Katy began to feel contractions and Charlotte’s heart rate began to drop rapidly. It was determined that Charlotte was no longer safe in utero and Charlotte was delivered by C-section. This was 8 weeks premature, 36 hours after we first became aware of health concerns with Charlotte, and we still did not know what was wrong. All we knew was that our little girl was extremely sick.
When Charlotte was born she was immediately intubated and rushed to the Neonatal Intensive Care Unit (NICU) at Lurie Children’s Hospital. Scared, confused, and overwhelmed we navigated our way to Charlotte’s NICU room where we found a team of doctors working to stabilize her. It wasn’t until Saturday evening (April 21), after a successful emergency bedside procedure, that we had a better picture of what was impacting Charlotte. A pediatric surgeon sat at the edge of Katy’s hospital bed at Prentice and drew pictures to illustrate the rare colorectal, urological, and reproductive anomalies that impacted Charlotte, which was in addition to the heart and spinal cord defects. All of which need to be dealt with surgically.
The first few days of Charlotte’s life were a blur. As we tried to process the idea that we had a baby girl with complex medical needs in the NICU, we also had responsibilities at home with our boys Henry (4) and Lyle (2). Katy stayed at home with them which meant we were suddenly scrambling to find full-time care with zero visibility to the length of our stay at Lurie’s. Fortunately, we have an amazing support system of family and friends that immediately stepped in to help with child care and meals at home. At the same time, Scott reached out to his employer who was extremely supportive and provided great flexibility in order for him to be home with the boys during the day and evenings with Charlotte. We live only 4 miles away from Lurie’s Children’s Hospital and felt it was essential that one of us be at Charlotte’s bedside, so she wasn’t alone but also to meet with doctors and understand her constantly changing prognosis and treatment plan. We were incredibly lucky to have a strong support system made up of family and friends, good insurance coverage, live in close proximity to the hospital, and have an understanding, kind, and flexible employer. Even with all of this we were barely able to keep our heads above water.
Charlotte sees 5 specialists including Neonatology, Urology, Pediatric Surgery, Cardiology, and Neurology. She is also monitored by 4 therapists (occupational, physical, speech, and nutrition). Communicating with her team of doctors and therapists, scheduling appointments, and understanding how to care for Charlotte is a full-time job. While in the NICU, Charlotte underwent 2 surgeries, several radiological procedures and weekly ultrasounds.
At home, Charlotte averages 11 doctor appointments per month. She’s been admitted to the hospital twice (for a total of 8 days) and been to the ER 5 times in 4 months. Her daily care includes: pumping breast milk and adding extra calories, changing dressings around surgical sites, and draining and changing surgically placed abdominal tubes. In addition to at-home care and appointments, we spend several hours per week on the phone ordering medical supplies, preparing for and scheduling future surgeries, and communicating with the insurance company.
Because of her weakened immune system, we isolate Charlotte as much as possible to avoid the risk of virus and infections. As a family, this requires that we "divide and conquer” in order to keep her brothers engaged in their regular activities and has meant we do not travel as a family outside the Chicagoland area.
Little Heroes League
We were thrilled to hear about the Little Heroes League and saw care coordination as a glaring need during our hospital stay. We were told it was optional to enroll and no cost to us. We first met Charlotte’s LHL care coordinator one month after discharge. Having someone to help us navigate the complexities of Charlotte’s care allowed us to feel a sense of relief for the first time since she was born. The “quarterbacking” and emotional support that our care coordinator provides has reduced our stress level, given us more time to focus on Charlotte’s daily care, and has allowed us more time to focus on work and spend time with our other 2 children. Charlotte’s care coordinator is an advocate for Charlotte in a system that demands it. She supports us at doctor visits, helps organize calendars, fields phone calls with therapists, and helps drive to get questions answered quickly.
Recently, our care coordinator has helped Charlotte avoid 3 emergency room visits. Moving forward, Charlotte will travel out of state to have several surgeries and procedures. Our care coordinator will play an important role in organizing follow up care and support communication between the two hospitals, which will prove to be invaluable.
We have experienced the challenges with coordinating communication and care across multiple disciplines that is inherent with complex cases, like Charlotte. Little Heroes League attacks these challenges and provides patients and families the best opportunities for success. When Charlotte is at home with her brothers and able to just be a “typical baby” we see her meeting milestones, growing, and thriving. As a family, we are grateful to be a part of Little Heroes League.