"The successive challenges with the child once plunged me into deep despair, triggering a flurry of negative thoughts. At one point, I even entertained the idea of taking both of us down. Fortunately, the hospital provided emotional support and gradually, I began to accept the reality that my child is special. As a mother, it became clear that my responsibility is to care for my child. If I can't muster the strength to carry on, who else will take care of my child?"
From Tampin, Negeri Sembilan, Loh Yun Xi was born under normal circumstances. However, abnormalities in her breathing were noticed by a nanny at the confinement center. Despite multiple medical consultations, nothing was found until she was five months old and began experiencing frequent bouts of wheezing. After hospitalization and examinations, she remained hospitalized for seven months, during which her mother stayed by her side 24 hours to provide care.
Doctors diagnosed her with laryngomalacia, soft dysmorphism, and central hypoventilation, necessitating long-term use of BIPAP to support her breathing and sustain life. Additionally, ongoing medical expenses include daily care, genetic testing, and a customized wheelchair, amounting to a total of RM60,000 sought by her parents.
【The child was hospitalized for seven months, experiencing episodes of cyanosis due to oxygen deprivation and requiring resuscitation by doctors. She also underwent a tracheostomy and tracheal dilation surgery during her hospitalization】
At the prenatal check-ups, the mother was informed of the possibility of the baby having short limbs. The baby was born full-term in February last year, and initially, everything seemed normal. However, after being discharged from the hospital, the baby was transferred to a confinement center where caregivers noticed abnormal breathing patterns and chest retractions. Despite multiple consultations, doctors could not identify the cause.
At five months old, the baby began experiencing wheezing, prompting the parents to seek medical attention. Hospitalization revealed abnormalities, leading to a two-month stay in a hospital in Malacca. Subsequently, the baby was referred to the pediatric respiratory specialist at Kuala Lumpur Hospital for further examination, where it was diagnosed with laryngomalacia, soft dysmorphism, and central hypoventilation syndrome.
The mother explained that the baby's brain fails to receive signals for breathing, resulting in a lack of understanding of how to breathe. Additionally, the baby's overall bodily functions operate slowly, and hormone production is impaired, necessitating hormone medication. Genetic testing was recommended by doctors but was deemed unaffordable by the parents.
Initially relying on CPAP for breathing assistance, the baby underwent a tracheal dilatation procedure at seven months due to persistent low blood oxygen levels and prolonged hypoxia. Subsequently, a tracheostomy was performed, and the baby now requires continuous oxygen assistance to avoid life-threatening situations.
As the baby cannot drink milk through the throat, a gastrostomy was performed to directly administer milk and medication into the stomach. With a seven-month hospitalization period, the mother has been providing round-the-clock care, learning how to operate the BIPAP machine, perform suctioning, clean the tracheostomy site, and maintain hygiene for the gastrostomy.
Currently, the baby's condition has stabilized, but discharge requires access to a suction machine and BIPAP, which the parents cannot afford along with other medical expenses.
The baby's father, Loh Wei Tian (30 years old), works as a production manager at a food wholesaler in Malacca, while the mother, Hung Xin Yi (28 years old), is an administrative officer who was granted remote work due to the baby's condition. This is the first child of the newlywed couple.
Following the assessment, One Hope Charity has decided to raise funds for Loh Yun Xi's medical expenses. The family has entrusted One Hope Charity with the fundraising activities and collection of donations. For inquiries, please contact the hotline at 04-539 9212, 016-4192 192, 019-2322 192, 018-911 4192."