Cleft Care Indonesia Foundation

What They Say

“My involvement in the Cleft Care Foundation (CCFI), as a European expatriate living in Surabaya, brings me much more than the deep satisfaction of helping the Foundation to give smiles to more than 200 cleft children every year. I have learnt so much about the Java Highlands from Clara, Endang, Lisha and now Emma, the Cleft Care staff, from the patients’ families I have had occasion to meet, as well as my regular contact with CCFI donors. Building bridges between humans can help us to understand each other better.... and to be optimistic about the fact that solidarity and compassion are values which can be shared on each continent and in every culture......”

Marie Jo (France) Present CCI Volunteer

“When my husband signed a work contract for five years, my friends often asked me what I would do in Indonesia while my husband was working. Perhaps something with charity, but I still don’t know what, I replied. Then we met some friends here who were already engaged in Cleft issues, and they encouraged my husband and me to get involved as well.

We will never forget the first time we met a young mother and her daughter in hospital. The little girl was getting her first cleft surgery and the mother was watching over her. I particularly remember the reaction of the mother. She was so grateful and embraced us for a long time, as if we were sent from heaven.

There, I found my motivation. I want to support this project with all the resources that I have! Indeed I realized that with only a small amount of money you can literally save the life of a little child. I feel very thankful for this opportunity to help as an expatriate in this beautiful country.”

Katrien Van Santvoort (Netherlands)
Past volunteer

“The smiles of children are our biggest reward but still, the call for help grows larger and more intense every day. Your help is crucial because it can determine the future of many children. Children suffering from cleft lip and palate deserve a normal living, we call for your helping hands together we can make a difference."

Lizzy Pelssers (Belgium) Past President Tulip Foundation & CCIf volunteer

Patients Stories

It is sad when a mother cannot feed her hungry newborn, meets no understanding from the community on why she is not able to breast feed, and finds nowhere to turn for support and information. Feelings of horror, guilt and anxiety towards the future of the child seem unbearable.

It is sad when a mother cannot feed her hungry newborn, meets no understanding from the community on why she is not able to breast feed, and finds nowhere to turn for support and information. Feelings of horror, guilt and anxiety towards the future of the child seem unbearable.

I was thankful to give birth to my son. However, I came home from hospital without knowing how to care for him. Later he became jaundiced due to the feeding problems caused by his cleft lip. Mothers of cleft children in Indonesia often share this feeling of helplessness and confusion. If a community is well-informed about Cleft problems, it eases the burden of the parents, and helps the children live a normal life.

Today my son is healthy and happy, but I still remember those early days of despair and desperation. It makes me very sad to know that there are so many late handled cases of cleft in Indonesia. If a cleft is handled too late, the chances of full recovery decrease. I feel a profound need to react, and it is my hope that this project will contribute to change this unfortunate reality.

Your contribution in any kinds; information, time, power, attention, equipment, supply, donation or others, means a lot for us. Let’s help these mothers care for their babies!
Tri Wijantisari (Indonesia)
Mother of child cleft lip
We met Febilia for the first time when she was 4 months old, a baby girl with a bilateral cleft lip and palate. At the first home visit, her condition was very poor; her weight was only 4.4 kg (standard weight at 4 months is 5 kg) and she was being fed with a feeding tube. Her mother told me that the pediatrician had asked her to feed using a feeding tube until Febilia was 10 months to prevent her from choking, so she had never fed using a nipple at all. It made me realize that we at Cleft Care have a lot of work to do, sharing information about feeding. I explained to the mother that she should stop using the feeding tube because Febilia needed to suck to exercise her mouth muscles, otherwise she would have problems when she started eating semi solid foods and also starting to speak. I also explained to her that what can prevent choking is the position during feeding, so I showed her the proper position to feed.

One week after our first home visit, I called the mother to monitor Febilia’s progress. She admitted that she hadn’t removed the feeding tube yet but she had already started to feed her daughter using a nipple and spoon feeder but she still had some difficulty sucking. However, Febilia’s weight had increased to 4.5 kg (100 grams in 1 week). The mother was still afraid to remove the feeding tube because she was worried that Febilia would lose weight.

Two weeks after our first home visit, the feeding tube was still in use and the child’s weight had increased only marginally. I discussed with my Children’s Coordinator about starting nutrition packages and she agreed. At the second home visit, the feeding tube was gone and the child’s weight had increased to 4.7 kg. With the subsequent help of the nutrition packages, Febilia’s weight continued to increase and her mother began to feel more confident using a nipple and spoon feeder. One month later, Febilia’s weight was 5.2 kg and she was scheduled for surgery, but unfortunately it had to be postponed because she had diarrhoea. The next surgery schedule was also postponed because the result of an x ray indicated that she had bronchopneumonia and needed medication for 3 months. Fortunately, during this time, her weight continued to increase and we were able to cease the nutrition packages because Febilia’s weight was now normal for her age. Finally, she recovered from the infection and had surgery for both lip and palate repair on February 20, 2011, when she was one year old.

Despite a small problem with the palate stitches after surgery (because Febilia didn’t like to drink plain water!) at the post operative check up, the doctor announced that the results of the surgery were good. At Cleft Care that’s all we need to hear.
Febilia Kharisma

For volunteering opportunity contact: +62 811 312 7070 (Indonesian, English)

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