Light from Heaven

Nur Jannah Binte Abdul Mutaleb, Age 3

“Jannah means heaven. Nur means light. Nur Jannah’s name means ‘light from heaven’. She is our light from heaven”

Looking at Jannah now, one would never guess that this active and cheerful girl underwent 2 major operations before she even turned one.

Diagnosed with Biliary Atresia when she was just a month old, little Jannah had a Kasai operation when she was just 45 days old, to remove a blocked bile duct and gall bladder and connect a section of her intestine directly to her liver.

Mom, Ida, recounts, “After the diagnosis and later the Kasai operation, we prayed for a miracle to happen.   We hinged high hopes that Jannah would get better because I kept blaming myself.  The professor told me it was not my fault.  But I still kept asking why.  Everyone kept questioning me as well, including my parents, who said this had never happened in the family before.”

Despite the surgery, Jannah’s condition soon worsened and she was put on standby for a liver transplant.  Ida continues,” We eagerly wanted to proceed but I was definitely not a possible donor because of our different blood groups.  Jannah’s father was a willing party but was found medically unsuitable due to dark spots on his lungs.  Our extended families were unable to help either. ” 

“Jannah’s bilirubin levels were dangerously high - about 500 µmol/L and there were no potential donors. We were desperate.  Thankfully, at that point, a generous anonymous donor came forward and passed all the medical assessments.”

The anonymous donor turned out to be Ida’s distant relative.  She had visited Jannah a couple of times previously and was moved by the family’s plight.  In a voice laced with gratitude, Ida relates, “I gave her a gift as token of our thanks but she did not want it.  She said it was between her and God.”

After the operation, Ida was faced with the difficulty of feeding Jannah.  She says, “Jannah had been fed through the Nasogastric tube, a feeding tube that carries food or medication to the stomach through the nose, for almost 7-8 months since she was 5 months old.  This meant that she had not been fed orally during this period. She did not know how to swallow.  We had to see the dietician and therapist regularly. On the eve of Hari Raya in 2015, when she turned one, the feeding tube was removed and we successfully managed to get her to drink from the milk bottle. Since Jannah already had teeth by the time she was one, she skipped eating soft foods like baby cereal and rice porridge, which most babies are started on from the time they are 6 months old.   She went straight to eating rice with finely minced vegetables and meat.”

To prevent Jannah’s body from rejecting her new liver, she has to take immunosuppressant medication, which lowers the body's ability to reject a transplanted organ.  However, one of the side effects of such medication is an increased chance of infections, especially in the early period after a transplant.  Ida explains, “I have to be very cautious when it comes to hygiene and food preparation.  After the transplant, Jannah has been admitted twice to test for liver rejection.  Rejections can happen any time.  When my husband comes home from work, he has to shower first before he can play with her.  He sometimes complains that I overdoing things but I tell him that it is all for Nur Jannah’s health.  Cleanliness is the most important if we want to prevent Jannah from getting an infection.  We do not go to crowded places.  I have heard of some children with liver transplant rejections who have had to go through multiple transplants.  I do not want this to happen to my Jannah.”

Ida continues, “During this period, I am appreciative of the help that Club Rainbow has given us.  Jannah has to see the doctor every month.  The monthly financial assistance we receive helps with our transportation and diapers cost.  Our social worker, Pauline has also helped us so much.  She is very nice and pleasant.  She always makes time to call and visit us, either in the hospital or at our home.  She will also inform us if there are any upcoming talks and seminars.”

“All the best to Club Rainbow on your 25th anniversary.  May you continue to sustain the good work you do.  Thank you for supporting us emotionally and financially.”

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