▲Max enjoying some quality time with his parents.

Max was a preemie. Born at 27 weeks, his heart and lungs were still not fully developed. He was subsequently diagnosed with congenital colonic stenosis and a rare congenital heart disease. At the NICU, the multidisciplinary teams provided intensive treatment and carried him through life-threatening heart failure, bowel obstruction and persistent hypoglycemia. His condition gradually improved and he could finally go home to his loving parents six months later.

“My son looked like a tiny black cat when he was born. He weighed less than 1 kg. That was really shocking to me,” Max’s mother Mrs Ching recalled. She had wished to help him gain weight, but he had difficulty drinking milk because of abdominal distention, and could only rely on artificial nutrition.

The healthcare teams worked tirelessly to figure out the causes. After a series of investigations including colonography, biopsy and laparotomy, it was confirmed that Max suffered from congenital colonic stenosis (narrowing of the ascending colon), which caused fecal blockage. Paediatric surgeons then treated it by resecting the narrowed segment. Under the feeding guidance of allied health professionals, Max could finally drink a bottle of milk by himself.

▲Max was transferred to the NICU of HKCH after birth and closely monitored in the incubator.

Problems came one after another. Echocardiography and CT scan found that Max had atrial septal defect and partial anomalous pulmonary venous return, which is a rare congenital heart disease. He developed heart failure at one point, but was stabilized with medications. Cardiac surgery will be required in the long run to cure him.

The first family trip

It was a big challenge for an infant’s family to endure ongoing complex treatments. The healthcare staff therefore prepared a special treat for the new family - a trip to the hospital’s small garden. They put Max, who was still connected with a catheter and monitoring devices in a stroller, and closely monitored him during the process.

“It was a very precious moment. For the first time, our family got to meet outside the ward. I felt emotional that Max’s world could be more than just the ceiling. He finally had a chance to see the sky. We are very grateful for what the staff did for us. They totally went above and beyond,” said Mrs Ching. Her husband agreed, “We had no idea how much longer the treatment would take. Being able to go to the garden together had given us great encouragement to carry on.”

▲With the help of healthcare staff, Max left the ward for the first time and had a lovely time with his parents in the hospital’s garden.

▲Encouraged by NICU nurses, Mr Ching handmade these rice bags to keep Max company while he was in the incubator. They were made of the couple’s clothes and embroidered with Max’s name.

When hope arrives

After spending his first 6 months at the NICU, Max could finally go home. Said Mr Ching, “Max had to face many different monsters during those days. To us, the wait for diagnoses was most torturing, and his condition could deteriorate suddenly. But Max had stayed strong and kept smiling, which gave us courage to get through the hard times. After he was discharged, we could stay together any time and go to the park. It’s blissful.”

Mr and Mrs Ching are thankful to various teams including NICU, paediatric surgery, cardiology, endocrinology, dietetics, occupational therapy and physiotherapy for providing timely treatment and advice, as well as giving detailed explanations about Max’s condition, treatment and risks. The compassion of everyone at HKCH also makes the couple believe that Max is in good hands.

Max is now doing well and regularly followed up by various specialties. Mrs Ching said Max had grown “from size XS to M”, meaning that her hard work had paid off. She wishes he can continue to thrive and get the cardiac surgery he needs when the time comes.

▲Max and the NICU team on the day of his discharge.

▲Max needs regular follow-up and echocardiography to monitor his health condition.