Stephen Oon, overcame Chronic Granulomatous Disease (CGD)

Stephen Oon was only three months old when he was diagnosed with Chronic Granulomatous Disease (CGD). Chronic Granulomatous Disease (CGD) is a rare type of immunodeficiency disorder in which certain immune system cells are unable to kill some types of bacteria and fungi. This leads to long term and recurrent life-threatening infections. The condition is usually discovered in very early childhood.

Stephen faced many challenges along his path to recovery, braving multiple surgeries, infections and even prolonged isolation from his family. A Haematopoietic (blood-forming) Stem Cell Transplant (HSCT) finally helped Stephen triumph over his disease.

In 2010, Stephen’s parents Daniel and Karen Oon brought him to the hospital after spotting a big lump on his neck. The lump was determined to be due to an abscess, and Stephen had to undergo immediate emergency surgery. He was also diagnosed with CGD at that time.

Daniel explained that the chances of having CGD are very small, and most patients with the disease do not survive past early childhood unless they receive a Haematopoietic (blood-forming) Stem Cell Transplant. The transplant should ideally occur within a year of birth.

A stem cell transplant was Stephen’s only hope to overcome his illness. While waiting for a stem cell transplant match, Stephen had to undergo further surgeries due to multiple infections. Even though a cord blood match was found in SCBB’s public inventory within two months, Stephen’s body had to be cleared of all infection before he was able to receive the transplant. This took over 2 years. His mother Karen Oon took three years no-pay leave from her job as a teacher to care for Stephen around the clock.

The Oon family had to change their lifestyle to accommodate Stephen’s health condition and keep him safe. Unable to bring Stephen out of their home due to the risk of contracting any new infections from people or the environment, Daniel and Karen also became more isolated from their family and friends.

One challenge the Oons had to overcome was the effects of Stephen’s colostomy, which was necessary due to perianal infections. The colostomy meant that Stephen needed an opening called a stoma in his abdomen, with a bag attached to collect his stools. Daniel and Karen took painstaking care to drain and clean the stoma bag twice a day, struggling to restrain and comfort their distraught son. The hardest part was that Stephen became more withdrawn after his colostomy, smiling less, sleeping more and even losing his appetite.

Thankfully, in 2013, Stephen was finally able to undergo his stem cell transplant. By that time, little Stephen had already undergone at least 10 surgeries and been hospitalized numerous times.

During the transplant process, it was critical that Stephen was kept confined to his sterile transplant room due to his immunocompromised state. This meant that the only people allowed into his room were his doctors, nurses and his mother.

At one particularly harrowing point of Stephen’s transplant, he suffered from fever, hypertension, hyperventilation, high heart rate and low oxygenation in his body at the same time. His anxious mother woke up several times each night to check that he was still breathing.

During Stephen’s treatment, Karen had to muster up every ounce of her strength to tend to him around-the-clock. Daniel had to travel between the hospital and their home, managing household chores and taking care of the couple’s other two children. He also had to continue working to support his family at the same time.

Compared to the difficulty with juggling work and his other duties, the part that Daniel found the toughest was the separation from his son. He began bringing Stephen a miniature toy car each day just to see his son’s face light up with joy – even if he could only witness it behind the glass doors of Stephen’s room or through video calls. The toy cars became Stephen’s comfort during his period of isolation, particularly when he yearned to go out with his family and play with his older sister.

In March 2013, just two weeks before Stephen’s third birthday, he received the best possible present. He had successfully reached the engraftment stage of his transplant. This meant that the newly transplanted blood-forming cells had begun to grow and make healthy new blood cells in his body.

Even after Stephen was discharged from hospital, his parents had to be mindful of keeping him in a clean environment until his immune system was strengthened. At that time, even seemingly harmless trips to the shopping mall had the potential to cause life-threatening infections, and could send Stephen back to the hospital.

Stephen used to consume up to 15 types of medications. With his improved health condition, his daily medicine intake was reduced, a great relief to his parents.

After his transplant, Stephen experienced many firsts with his family. His first stroll in the park, first meal in a restaurant, first visit to the supermarket and many more. Daniel shared that Stephen was initially “like a fish out of water, who is not familiar with social settings” due to the isolation he experienced during his illness. After his treatment, Stephen is now able to catch up with other children of his age.

Daniel shared that “After three and a half years of living with immunodeficiency, it was priceless to see the look on Stephen’s face when he went shopping for the first time to buy his first pair of sandals.” Stephen upon visiting his first toy store remarked “Now that I’m cured, I can go everywhere!” – revealing the joy that a successful cord blood transplant has brought him.