A CHILD’S BATTLE LIVING WITH HIRSCHSPRUNG’S DISEASE
Written by Lisa Ambrose
Rozana Tiwing, mother to little Noah who is born with Hirschsprung’s Disease shares the positive recovery after the operation.
Noah Lester, a 3-year old boy from Kampung Baru Bingkor, Keningau was born with a rare genetic disease called Hirschsprung’s (HIRSH-sproongz) disease. It’s a condition that affects the large intestine (colon) and causes problems with passing stool. It’s caused when nerve cells in the colon don’t form completely hence unable to control the muscle contractions that move food through the bowels. Without the contractions, stool stays in the large intestine.
Noah’s parents were hoping for a miracle after they were informed that Noah’s condition was getting worse yet the public hospital would need to queue Noah before being able to get him a specialist appointment at the government hospital. “There were many times I cried and even screamed out of desperation.”
As a baby, Noah was treated by Dr. S. Rajah and follow up at Likas Hospital regularly. Rozana recalls Noah often fall sick and ended up at the Emergency in Keningau Hospital. During one of
Noah’s follow up at Likas Hospital, they found out Dr. S. Rajah have moved to Gleneagles Kota Kinabalu Hospital. It was out of desperation that Rozana decided to find him at Gleneagles Kota
Kinabalu Hospital as he treated Noah since he was a baby.
In mid 2017, during their consultation with Dr. S. Rajah , Consultant Paediatric Surgeon at Gleneagles Kota Kinabalu Hospital, they were informed that there will be two surgeries involving as the treatment of his condition and the cost for Noah’s operation would cost over RM30,000 each. “There was absolutely no way we could afford that,” says Lester John, Noah’s father 34 years old who is a supervisor. They tried raising some funds through their friends and family but they were way short.
“One day, I received a phone call from Gleneagles’ staff who told us about Khazanah Integrated Healthcare Holdings (IHH) Healthcare funds who provides partial or fully sponsored medical treatment. She suggested for us to apply for it. We are forever grateful to Gleneagles for matching this aid to us.”
Noah had his first surgery done in October 2017 at Gleneagles where he was warded for 8 days. After a month, Noah fell sick and started vomiting faeces. This was due to infection in the intestine which was not related to the surgery. “He was vomiting his faeces. We knew we had to act fast so we went back to Gleneagles” . Noah was brought to Emergency and Dr. Rajah thought the time was also right to perform the second planned surgery during the same hospitalization.
Sitting with the family in a café in Keningau 8 months after the surgery, Noah seems cheerful and the parents remarked how well he is progressing. He has never been sick ever since his last operation. Asked on his progress, the mum cheerfully answered that Noah now knows his ABC and can count to ten. “He is playful and even bullies his big brother,” she added. Noah has an older brother named Noel, aged 8.
Noah can now pass motion normally although he still needs to be prompted and assisted. It will usually take him 30 minutes at the toilet before he can “go” . At times he will still hold it because his brain has been ‘trained’ to pass it through his abdomen – referring to the hole on the right side of his abdomen that was pierced to allow him to pass motion from his small intestine when he was about 1 year old. “This (first) operation wasn’t ideal for him as it prevented the full absorption of nutrient for his body. His growth was somewhat stunted back then.”
“We still can’t believe we have managed to overcome this ordeal It’s surreal. Thank you again Gleneagles, Dr. S. Rajah and Khazanah Integrated Healthcare Holdings(IHH) Healthcare funds for changing our lives.” – Rozana Tiwing
Very pleased and thankful with Noah’s current progress, they repeatedly recorded their appreciation and gratitude to Khazanah Integrated Healthcare Holdings (IHH) Healthcare funds and Gleneagles. They remarked how professional, caring and kind the medical team were throughout Noah’s treatment.
What are the signsand symptoms of
An early symptom in some newborns is failure
to have a first bowel movement within 48 hours
after birth. Other symptoms may include:
• green or brown vomit
• explosive stools after a doctor inserts a finger
into the newborn’s rectum
• swelling of the abdomen
• diarrhea, often with blood
Symptoms in Toddlers and Older Chil- dren Symptoms of Hirschsprung disease in
toddlers and older children may include:
• not being able to pass stools without enemas
or suppositories. An enema involves flushing
liquid into the child’s anus using a special wash
bottle. A suppository is a pill placed into the
• swelling of the abdomen.
• diarrhea, often with blood.
• slow growth
For more information about children’s common surgical conditions, kindly contact Dr. Rajah at Gleneagles Kota Kinabalu Hospital at 017-979 8888 or visit www.gleneagleskk.com.my