Meet Sloane

Name: Sloane
Diagnosis: Congenital Diaphragmatic Hernia
Age: 3


Kasie and Chris went into the 20-week ultrasound in the summer of 2020 for their third pregnancy feeling good. They had done it twice before and knew what to expect. The ultrasound technician began the appointment and was very upbeat, but as she continued her work, her demeanor shifted. At that point, Kasie knew something was wrong. Their doctor told them the ultrasound had revealed their baby had congenital diaphragmatic hernia (CDH).

The news was shocking and left Kasie and Chris feeling numb. They were told to avoid Google until they could meet with the specialists at St. Louis Children's Hospital. The team went in-depth about what was found during the ultrasound and shared more about CDH and what kind of journey the family could expect once their baby was born.

Right after Sloane was born, she was intubated. She needed 14 medications delivered through an IV to sustain her until she could have surgery to repair the birth defect. She was also diagnosed with severe pulmonary hypertension as well as left ventricular dysfunction. Since Sloane's mom is a cardiac nurse, she also knew that Sloane's B-type natriuretic peptide (BNP) levels were dangerously high. With an average range of less than 1000 for healthy babies, Sloane's level was 44,000. According to Sloane's mom, she was one of the sickest babies in the NICU.

She continued to recover but when they started to wean her off medication, Sloane started to decline. Eventually, Sloane required extracorporeal membrane oxygenation (ECMO), because her tiny body just couldn't recover on its own. ECMO pumps and oxygenates blood outside the body using a machine, which allows the patient's heart and lungs to rest. Unfortunately, Sloane also suffered a stroke while on ECMO, but her care team jumped into action and provided the unmatched expertise and loving care that she needed to completely recover.

After six days on ECMO, Sloane was able to come off the machine. Her pulmonary hypertension started to improve. The care team wanted to give Sloane more time to grow, and she finally graduated from the NICU in April 2021. She came home with several medications and required a feeding tube several months later, but Sloane was improving every day. She was getting physical and occupational therapies to help her improve her strength and eat better.

Sloane is now 3 years old and the center of their whole family. Her older siblings are very protective of her, and their mom says Sloane is the best eater in their whole house. Sloane will continue to visit the CDH clinic until she's 5 years old.

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Because of You:

A world-class level of care is available right here in St. Louis, allowing Sloane to receive lifesaving treatment and ongoing care to grow up and live a happy, normal childhood. Sloane's dedicated team at St. Louis Children's became a second family, and her parents are grateful for the team that cared for Sloane during those dark days.

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