A baby girl named Lulu is undergoing treatment for a rare genetic disorder that has caused her tongue to grow to an abnormally large size, impacting her ability to breathe, feed, and sleep. Lulu, born in April, was diagnosed with Beckwith-Wiedemann Syndrome (BWS), a condition characterized by excessive growth in various parts of the body.
Due to the severe macroglossia—the medical term for an enlarged tongue—associated with her condition, doctors are considering bringing forward surgical intervention to reduce its size and improve Lulu's breathing and feeding capabilities. Further medical evaluations, including MRIs and ultrasounds, revealed that Lulu also has multiple non-cancerous tumors, known as hemangiomas, on her liver. While these tumors are not malignant, they require close monitoring due to the potential for complications affecting liver function, such as rapid breathing, feeding difficulties, poor weight gain, and jaundice.
Lulu's family, residing in northern New South Wales, faces significant logistical and financial challenges due to the necessity of frequent travel to Queensland Children's Hospital for her care. Her father, Chris, has been unable to work since Christmas, and her mother, Daisy, dedicates her time to Lulu's care, managing numerous medical appointments, hospital stays, and interstate travel. A GoFundMe campaign has been initiated by a family friend to assist with medical expenses, travel, accommodation, and daily living costs.
Lulu currently relies on supplemental oxygen delivered through nasal tubes to maintain safe breathing levels. This reliance is expected to continue until she can undergo her tongue reduction surgery. A recent sleep study highlighted the severity of her condition, revealing that her oxygen levels dropped to 50 percent during sleep, leading to a diagnosis of obstructive sleep apnea caused by her enlarged tongue obstructing her airway.
Children diagnosed with BWS are also subject to ongoing medical screening due to an increased risk of developing additional health issues. Lulu's treatment regimen includes regular three-month visits to Brisbane for scans and blood tests, alongside monthly thyroid check-ups.
The family's challenges began even before Lulu's birth. Daisy experienced serious complications during her pregnancy, leading to a hospital admission at 24 weeks. To remain close to specialized medical care, the family temporarily relocated to Ronald McDonald House, where Daisy stayed from Christmas until Lulu was born prematurely at 36 weeks. During this period, Daisy was largely wheelchair-bound, and Chris managed her care and that of their two older sons, Zephyr and Kai, who also had to attend a different school.