Real Life Story:
A hole in the heart,
Toddler Nurnafisyah Jafarlie's Story.
Siti Nurnafisyah Jafarlie was only 4 months old baby when the doctor discovered she had ventricular septal defect (VSD) or commonly known as hole in the heart. “We were surprised, sad and heartbroken when the doctor informed us about her heart condition. Since she is our first child, we were very afraid of losing her,” said Siti Norihan Ibrahim.
Siti Norihan Ibrahim and husband Jafarlie Matusin have two daughters. The eldest is Siti Nurnafisyah Jafarlie and the youngest is Siti Nurnazihah Jafarlie. Siti Norihan work as an assistant chief cashier while her husband is a supervisor and they all live in Papar.
It was one of the regular review and vaccine day for baby Nurnafisyah. Suddenly, the doctor discovered an irregular heart beat. The doctor told Siti Norihan that her 4 months old baby may have a heart condition and advised her to take her baby for an ECHO scan. The ECHO scan allows doctor to clearly see any problem with the way the heart is formed or the way it’s working. After the scan, it is confirmed that baby Nurnafisyah has a hole in the heart.
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A complete happy family, one year after the operation. From left: Jafarlie
(father), Siti Nurnafisyah, Siti Nurnazihah (youngest sister) and Siti Norihan (mother).
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VSDs are quite common, varying from tiny defects such as a pinhole in size to much larger ones. Most children with hole in the heart may not have any major symptoms, but they may get easily tired, always sleeping or out of breath. Larger hole will require surgery to correct the defect.
Nurnafisyah was given medication soon after they found out about her heart condition. About 30% or more babies’ with small defects will close spontaneously during early childhood but Nurnafisyah is one of the 70% that did not.
By the age of 3, Nurnafisyah’s hole in her heart did not go away which made her mother determined to find another way to help her daughter's condition. The doctor that has been treating Nurnafisyah advised Siti to seek further advise at a private hospital. This lead Siti to meet Dr. Abu Bakar Mamat, a Consultant Paediatric Cardiothoracic Surgeon at Gleneagles Kota Kinabalu Hospital.
After consulting Dr. Abu Bakar Mamat, they were given options for further treatment in Kuala Lumpur or Kota Kinabalu (Gleneagles Hospital) and they chose Kota Kinabalu after considering the logistics problems, travelling and undue stress of having to leave behind the rest of the family.
The operation was scheduled for their 3 years old toddler on the 21st November 2015 at Gleneagles Kota Kinabalu Hospital. Siti and her husband was very anxious and scared about the entire procedure as there are endless of risk and complication that may occur during the operation.
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| Five days after operation, Nurnafisyah lying in bed (centre) with her parents and Consultant Paediatric Cardiothoracic Surgeon Dr. Abu Bakar Mamat. |
Nurnafisyah’s open heart surgery was successfully conducted and giving a new milestone to Gleneagles Kota Kinabalu Hospital as the first private hospital in Sabah to perform paediatric open heart surgery locally.
Finally, Siti and her husband’s heart is also completed, relieved and happy. The successful operation may left a massive scar on Nurnafisyah but the entire family is happy that she is now a normal active child and doesn’t have to take any more medications. She has also started attending Kindergarten in Papar.
In Sabah itself, there are nearly 400 new cases of congenital heart disease diagnosed every year with up to 10 of every 1,000 newborns. An open heart surgery is a major operation and the medical expenses can amount up to RM60,000. Siti and her family could not afford the surgery therefore her case was proposed for the Khazanah IHH Healthcare Fund by the doctor.
Nurnafisyah’s hospital expenses were fully paid by the Khazanah IHH Healthcare Fund, which provides partial and fully-sponsored medical treatment to needy patients in IHH’s home markets of Malaysia, Singapore and Turkey.
The hospital also to engage with the State Government to provide help to members of the local community who may require paediatric heart surgery.
“ Previously, most children with heart congenital heart disease had to travel to Peninsular Malaysia or abroad to get treatment. With the establishment of Gleneagles Kota Kinabalu in Sabah, we are now able to perform paediatric heart surgeries locally, giving a new lease of life, ” Dr. Abu Bakar Mamat, Consultant Paediatric Cardiothoracic Surgeon.
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