The Life Changing Story of Charlie

On Your Side | Real Life Story: Often times, we hear stories of people with health-related problem and their successful journey of healing. This time, Parents Avenue brings you the life-changing story of Charlie from Kota Marudu, Sabah.

Written by Sylviannie Jreneus 
Parents Avenue Magazine Issue No.11 April to June 2018

Charlie with his parents in the ward on the day of discharge.

Charlie bin Magawa is a 9-year-old boy from Kampung Mantus, Kota Marudu. He is the fifth and the youngest child of Magawa bin Malugot, 55 and Roining binti Kulamau, 49. Charlie has two older brothers and two older sisters. The first two siblings, aged 28 and 25, are currently working with a private agricultural company in Australia. The third sibling, aged 21, is currently unemployed, whilst the fourth sibling is studying in Form One in SMK Tandek, Kota Marudu. As for Charlie, he goes to SK Tanjung Batu, Kota Marudu as a Year 3 student. With a big passion for badminton and art, Charlie leads a normal life just like every other boy at his age. But, little do we know, that Charlie was previously diagnosed with a serious health condition that, had he been left untreated, could have cost him his life.

It all started when Charlie, who was then only 5 years old, was down with fever and later begun to experience breathing difficulties. As every concerned parent would do, his parents brought him to a Kota Marudu Hospital to seek for further help. The doctor on duty did an X-ray on the little boy, which led to the first diagnosis – Charlie had heart issues. The same day that he was diagnosed, Charlie was sent into emergency and was straightaway transferred to Sabah Women and Children Hospital, Likas, Kota Kinabalu.

He received more detailed tests in Sabah Women and Children Hospital. A blood test was performed and the results came in positive that he was suffering from Rheumatic Heart Disease (RHD). A paediatric cardiologist from Sabah Women and Children Hospital, Likas did an X-ray on Charlie. He had found that one of Charlie’s four heart valves was infected.

After detection, Charlie was given antibiotics to fight off against his valve infection, and that treatment lasted for a year. Unfortunately, the valve was still infected, so Charlie had no other choice than to receive a monthly injection during the second year until proper treatment could be done; which is to undergo a heart surgery.

Charlie’s scar 3 months after the surgery.

Rheumatic Heart Disease (RHD) suffered by Charlie is a condition of permanent damage to one or more heart valves. It is caused by rheumatic fever, which is a complication of an untreated bacterial infection with Streptococcus, or “strep”. Like in Charlie’s case, it is all started when he was down with fever but at the same time, he experienced breathing difficulties. Rheumatic fever, which symptoms are shown by Charlie during the early detection, is an inflammatory disease that follows a strep infection. If it is left untreated, it can affect many tissues, especially the heart, joints, skin, or brain. The infection may cause heart damage, particularly scarring of the heart valves. This forces the heart to work harder than usual to pump blood. In some cases, the damage may resolve on its own. However, there are also cases where the damage is permanent, which eventually causes heart failure. Heart-related complications of rheumatic fever may develop months or even years after the initial strep infection.

The doctor who handled Charlie’s case in Sabah Women and Children Hospital, Likas made an effort to ease out the family’s application to get funds from Sabah Council of Social Service (SCSS) as little Charlie needed to undergo a heart surgery as soon as possible. They waited for less than a year before the application was finally approved by YB Datuk Hajjah Jainab DSP Hj Ahmad Ayid, the Ministry of Community Development and Consumer Affairs. That was the first good news received by the family for Charlie’s case. In the meantime, Charlie still depended on the monthly injection until he turned 8.

At first, Charlie’s parents were informed about their available options on where the surgery can be performed, which was at a hospital in India, or Gleneagles Kota Kinabalu Hospital. Due to distance, going to India was not the family’s first option, so they opted for Gleneagles Kota Kinabalu Hospital as they were able to perform the heart surgery for Charlie there. That was indeed the second good news for the family.

Dr. Abu checking Charlie’s heart.

Dr. Abu Bakar, Cardiothoracic Surgeon of Gleneagles Kota Kinabalu Hospital finally handled Charlie’s case. Before surgery, Charlie’s condition worsened up until the point where he turned terribly weak. His skin turned pale, he lost a lot of weight and he was down with swollen chest. He also experienced abdominal and chest pain which made his condition even worse. He was still facing difficulties in breathing due to the worsening of his heart condition. His parents were very heartbroken to see their youngest child being in that condition and have been praying hard to be able to see Charlie’s health back on track again. The strong parents refused to give up on their son.

So the heart surgery was done and there comes the third good news and the biggest blessings for the family. Charlie’s heart surgery was a success! Thanks to all doctors who did their parts throughout his journey as a Rheumatic Heart Disease patient, from a very weak and thin little boy, Charlie is now an active boy and he gained weight as his appetite increased. His parents’ prayers have been answered. Just like typical adventurous boys of his age, he is always with his outdoor activities, especially cycling and playing badminton. The surgery done by Dr. Abu Bakar from Gleneagles Kota Kinabalu Hospital is indeed life changing. Charlie’s case is a living proof of that.

The operation cost is approximately RM60,000 to RM80,000 and was fully funded by Sabah Council of Social Service (SCSS). SCSS, or also known as Majlis Perkhidmatan Masyarakat Sabah (MPMS) is established under the Chairmanship of the Commissioner Labour and Welfare with the main purpose of assisting voluntary welfare work and it includes for health-related cases like Charlie’s. SCSS is later became the constituent partner of The National Council of Social Welfare, Malaysia alongside with the Sarawak Social Welfare Council.

Charlie with his parents at Gleneagles Kota Kinabalu Hospital

As parents, Magawa and Roining were over the moon and were very thankful to be able to receive full funding from SCSS to cover Charlie’s heart surgery cost at Gleneagles Kota Kinabalu Hospital. It was a blessing for the family who are desperate to see their beloved child to live a normal life again. And Charlie just did!

As a father, Magawa has a message for every family who are facing similar situation like theirs. To him, patience is the key. There must be a cure for all diseases, as long as we follow what the doctor’s advice. Doctors are specialised in their own fields and of course the suggestions made by them are the best. As for Charlie’s mother, Roining, she said that it is important for us to act fast for treatments and don’t be afraid to do the surgery because it does change our life. Like her husband, she also encourages each of us to listen to the doctor’s advice.

Gleneagles Kota Kinabalu Hospital, where Charlie’s life-changing heart surgery was performed, is a tertiary level hospital bringing Sabah a Healthcare facility of International standards that shall work towards enhancing care in the state of Sabah. It is assimilated with regionally well-established premium Gleneagles brand inculcating a facility with high quality amenities / comforts, service levels to match, infused with cutting edge technology and have a highly trained team of consultants and staffs.

Gleneagles Kota Kinabalu Cardiac Centre is bolstered by prevention program, diagnosis and treatment directly to the patients, both adults and children. The cardiac team consists of Interventional Cardiologist, Cardiothoracic Surgeon, Cardiac Anaesthetist, Perfusionist, Peadiatric Cardiologist & Cardiac Technicians. They have a standby cardiac catheterization laboratory that would operate for 24 hours. Thanks to the professionalism of the Gleneagles Kota Kinabalu Hospital, many lives were saved, that including Charlie’s.

A hole in the heart, toddler Nurnafisyah's Story

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.

A complete happy family, one year after the operation. From left: Jafarlie

(father), Siti Nurnafisyah, Siti Nurnazihah (youngest sister) and Siti Norihan (mother).

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.

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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REAL MOMS WITH REAL CHALLENGES: Fitness After Pregnancy

Photographs by Linawa Photography | Interview by Stella Matilda

The most challenging aspect of getting back into shape after pregnancy is not lack of motivation, sleep deprivation, or fatigue - it’s time. New moms stay busy almost every moment of everyday. Finding time for fitness activities right now may seem as feasible as climbing Mount Everest. After all, if you barely have time to wash your hair, how can you find time to exercise? To help you get motivated, we are sharing some stories of real moms who are getting in shape and making it work. Exercise has not only improved these women’s health but also helped them to increase their confidence. Being active has reacquainted them with their bodies, given them contact with the natural world, and provided them with a sense of accomplishment.

JO MOSS
Part owner of Changgih Designs
Children: Hailey Jade (15 mo)

Had you always been active before pregnancy?

Before I was pregnant I was an avid rock climber and also frequently worked with a Personal Trainer. So at that point I was working out probably 4 times a week alternating between the two activities as much as I could. I haven’t had the greatest athletic history as I had a spinal problem that held me back from it. Little did i know it was mostly a mental block and once I met my husband (Gym Owner of X45, nutritionist and personal trainer) he gave me confidence in my own abilities and i haven’t looked back since. It is really a personal choice for those with certain limitations to understand they have the opportunity to push these limits. I have, and i haven’t looked back since. Being active both mentally and physically is a lifestyle that i have grown very accustomed to.

WENCY JELSON

Teacher

Children: Caleb Jeremiah Willey (4), Cayden Moses Willey (2) & Clement Eden Willey (4mo)

What type of challenges do you face as a mother of 3 to maintain your fitness routine?

Being a full time working mum of three incredible boys in four amazing years, I have to admit, there are times that I feel so tired and weak. There are many mornings that my alarm goes snoozing. I’m too lazy to get up and I just want to snuggle in my comforter. My teaching job has really worn me out. My first son was diagnosed on the Autism spectrum. Having a special needs child is overwhelming. My 2 years old son is very active and he never sits down. My 4 months baby requires plenty of attention too.

CHARLIN DELVO 

Personal Assistant

Children: Finlay Kate (15 mo)

How do you feel about your body before and after pregnancy?
As a person who was never into fitness, before pregnancy my body was not a big issue to me. Being 58kg is not an ideal weight for someone who is a 5’2” of height. But at that time, I wasn’t too bothered about gaining weight because I know I will eventually shred when I started running or going to the gym. When I do, I work out at the gym
for a solid 2 hours, 4 times a week and if I’m careful with my foods, I can simply lose 3-4kg in a month, that easy. And if I don’t lose weight, I know I gained muscle somewhere, somehow. That’s how easy-going I was when it come to my body.

After pregnancy, in the 1st year I was kind of letting go and not worried about getting my body back. It’s like ‘fitness’ was the last topic in my bible of motherhood. I was in a total babymoon phase of my life. BUT, this would sound too good to be true if I said I was totally fine with the transformations of my body. My tummy was flabby and hanging, I had fats around the midsection and sides of my abdomen, I can see my under arms are swinging when I move them.

All these changes were a little strange to me – I wasn’t sure if I should be worried or just be patient because all mothers go through the same stage. As time goes by, I think my body is ready now, I guess it’s time to start somewhere. I know it won’t be easy to get ‘that’ body back but I’m determined to work hard on being a fit & healthy mom for my child.

SHEENA APIN 

Stay at Home Mom

Children: Ava Jipiu (7), Azarias

Jipiu(5) and Tavakas Jipiu (5mo)

What do you think is the most common myth about mothers getting back into fitness?
A common myth will be that you’re gonna eat less when you get back into fitness hence breastmilk would become lesser? I do fitness so that I can eat a lot and at the same time still able to maintain my body and fully breastfeed my baby. The other myth is that you need to workout 1 hour per day and I don’t have time to workout because I am busy. Wrong... 20 to 30 mins of a fully intense workout is equal to the effect of 1 hour of workout. Even a with 10 mins tabata workout you’ll be getting the full benefit of it and your metabolism would stay active the whole day. As a mother you don’t need to stay fit anymore. This is the crucial period when you need to use the most of your energy since we are a multitasking species it is compulsory to be fit!

MELISSA J. PAYNE 
Environmental Consultant
Children: Thalia (3) and Trianna (5mo)




What would you say to mothers who are struggling to get back into fitness?
It all comes from you; it’s your choice to make. If you want to get back into shape and fitness you can always do this from your own home or do it together with your kids. You can start slowly by cooking and eating healthier meals and you can have this with your family. You can take walks with your babies or toddlers when you’re done with work or done with chores. You can do simple workout in your own home while watching over your kids. It’s actually not difficult but the real struggle that most moms have lies within them. Its procrastination and excuses! So the first step to take is to eliminate that feeling and to stop making excuses.

NIRWANA WILLIAMS

Total Enrichment Instructor and Property Manager

Children: Maya Faith Ibraheem David Williams (8) and Tia Starr Ibraheem David Williams (4)

What would you like your children to learn from your healthy lifestyle?

I love this question! I would hope that my kids will learn that keeping a healthy lifestyle is not temporary, that it is a forever ever changing journey, a never ending learning journey. For them to learn that irregardless of whatever comes their way, health will always be one of their biggest priorities in life. To make it an appointment with themselves, an appointment that they will never cancel.

For whatever that is going on nowadays in our tough world some of which is not within our control, I would like my children to always remember that “THIS” they CAN control. And it is a very empowering choice each time they decide to eat vegetable over nuggets, or to go for a run over lazying on their Ipad.

I would also hope that they will learn to not give up and when the going gets tougher... they need to toughen up more. And most importantly for them to know and understand that living a healthy lifestyle is for themselves and not to let others dictate what they believe or do.

You can read the complete interview of this five empowering mothers in Parents Avenue Magazine Issue No.4 July to September 2016. Available throughout Sabah, Labuan and Sarawak. We know you're a busy mom, so call 011-29016966 if you need it to be delivered to you! Happy reading!