Physical Health Ethiopia Project #51043

Provide safe access to 25 cleft surgeries

by Project Harar

Provide safe access to 25 cleft surgeries

Project Report | May 16, 2023
Provide safe access to 25 cleft surgeries

By Saskia Foulds-Holt | Fundraising and Admin

BILAL’S STORY

Bilal came to our recent programme in Bahir Dar, with both his mother and father who are farmers in North Gondar. Bilal has previously had surgery to correct his cleft lip and returned to receive cleft palate surgery. He is 3 years and four-months-old and is the fifth chid of his parents.

His mother explained to us that“One of the most frustrating challenges for me was feeding my baby. My baby kept on crying and I could not help him. I was really stressed. I wondered how the child would be feeding and suckling. He used to cry a lot and this depressed my heart. To a point I felt like I could not cope at times”.

Bilal’s mother is not alone in her distress surrounding her sons condition. Parents of children with cleft lip and palate often report to us feelings of heartbreak and worry for their children. Without support of cleft professionals, parents (especially mothers) are often left feeling helpless, struggling to feed their children and provide them with the additional care they need. Therefore, the work that project Harar does in providing training in cleft care for Ethiopian health and social workers is so vital. Having support groups and professional advice can help parents to manage their child’s cleft condition until they are able to get surgery, enabling parents to feel less alone and helpless like Bilal’s mother did.

Bilal’s Mother also expressed the loneliness and isolation she and her family have experienced because of stigma surrounding her son’s condition. “I don’t like the way people gossip about my baby. They do not say the things when we are together but they say things when they go away because we believe all things are done in the will of Allah.” Different religious and cultural beliefs across Ethiopia can often result in mothers experiencing blame for their child’s cleft, with people believing that the facial difference is a curse or a punishment for something the mother has done. These misconceptions are incredibly upsetting and damaging for the mothers, leading them to feel personal responsibility and guilt for something that was not their fault. Bilal’s mother went on to explain that “People from my community distanced themselves from us. I was only left with the father of the baby and one sympathetic neighbour.”

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Jan 16, 2023
Provide safe access to 25 cleft surgeries

By Saskia Foulds-Holt | Fundraising and Admin

This appeal helped to provide safe access to surgery to infants and children from the most remote and disadvantaged areas of Ethiopia. For families in rural communities the cost and distance of reaching the capital prevents infants from accessing essential treatment and surgery for a cleft lip or palate, which left untreated impacts child development, social integration and the ability for them to reach their full potential. The money raised by this campaign helped to change the lives of 25 Ethiopian children, Amen is just one example of the impact this campaign had.

Amen came to Arbaminch General hospital to receive surgery for his cleft lip, he is four months and two weeks old and came with his mother and father. The family found out about Project Harar’s programme from Facebook, his mother told us that her “husband uses the app and he saw one of the posts on Facebook and we followed up on the date of the mission. After that we travelled here so Amen can get his surgery.”

Amen’s mum went on to recall her experience at the hospital, explaining that “When he was first born the nurse saw him and told me that Amen has a condition. I did not see him at that moment, so I was confused and scared. She proceeded to tell me that he had cleft lip and that it could be corrected through surgery. She then handed him over to me and when I saw him, I cried, he was my first-born child, and I could not control myself. The doctors told me that he will be fine and that he could get the surgery once he was old enough.”

When Amen’s parents took him home for the first time, many people asked them what had happened to him, and they had to explain that it was a condition he was born with. However, his mother told us that they were lucky to “live in a city area, where some people are familiar with cleft lip, and they told me that it would be corrected by surgery and how they have seen similar conditions before.” Having people around the family who were aware of cleft conditions provided reassurance that Amen would be able to receive treatment which would allow him to live a life without health and social barriers. “When he grows up, I want him to be a good student and become a doctor someday, I want him to help people by his profession.”

Amen's mother wanted to express her gratitude for his treatment, "From the bottom of my heart thank you for all you have done and for all you are doing. I have seen many children you have helped before on social media and as a mother, I can tell you how happy I am to see children like Amen getting this surgery.”

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Sep 14, 2022
Selam and her mother recount their cleft treatment

By Liz Muntunkaye | Fundraising, Communications and Admin Assistant

Selam is one of the children that came to Woldia Comprehensive Specialized Hospital to receive cleft palate surgery. Selam had her cleft lip surgery through one of our missions held at at Woldia when she was one year old. Selam lives with her elder sister and mother. We sat with her mother, Thethay,to discuss her experiences and journey in accessing cleft lip and palate treatment with Project Harar.

It is always vital to receive feedback from the families who access our services, as it helps us to further understand how we can adapt our cleft treatments to accommodate all families who need treatment for their child. Whether it is the changing environment, climate, or unique situations with the family, Project Harar and partnering hospitals always make sure to keep in contact with our clients to better facilitate them and those to come.

“After her cleft lip surgery I was beyond happy. I took her home and followed the procedures they told me and the wound healed very well that you cannot tell she had a surgery. In addition, people who saw her before the surgery were amazed and they say it just looks like a birthmark. ”

Questions for Selam's mother:

Can you introduce your child and yourself?

Her name is Selam and my name is Thehay.

Where do you travel from?

We came from Lalibela. My birthplace is Lalibela but living closer now.

Tigist did have cleft lip surgery before. Where did she receive the surgery?

She received the surgery here at Woldia hospital when she was one year old.

Where did you hear about the mission?

First, I saw it on TV then I came to Woldia hospital to register after that they called and informed me about the date of the surgery.

Selam poses for a photo as her mother reflects on her photo as a baby.

How did you feel when she was first born, and when you saw her for the first time?

/When she was first born I was scared and did not know what to do, I thought she was the only one born this way. I have never seen a child born this way before and I was not aware of cleft lip or palate before that.

I gave birth to her at Woldia hospital and when I asked the doctors what to do, They explained everything to me and gave me a referral letter to take her to Addis Ababa, Black Lion (Tikur Anbessa) hospital first. As her weight was small, they told me she could not have the surgery. Then after that, I took her to Debre Berhan. When we reached Debre Berhan hospital, she had cold and sore throat and again they could not operate on her. Then I took her back home, after a while I saw the advertisement on TV of Project Harar's programme at Woldia Hospital and I brought her here for her surgery.

How was the community’s outlook do they ask you a lot about her?

/When people see her for the first time they asked me if I dropped her or, something else. In addition, others say I must have taken some medication when I was pregnant with her. However, I was very careful when I was pregnant and did not take any medications. Some people also mention it could be a hereditary thing from my side or my spouse’s side of a family.

What did you feel when she had her cleft lip surgery?

I am very happy that she is getting the surgery now before she goes to school. I know the challenges or problems she would have faced if she did not get the surgery. I have went through a lot raising her by my own.

My spouse left me before she was born so I had to work hard to provide for her and her sister while following up her medical treatments.

Did you face difficulties feeding her when she was a baby?

Yes, the food would often come through her nose. She was never breastfed, I raised her with powdered milk.

“One of my biggest challenge was feeding her. As she had both cleft lip and palate, feeding her properly was challenging for me and as a result, her weight was too little most of the time. After a while, I started using bottles and syringes to feed her which helped a lot.”

How about after she had her cleft lip surgery?

After her cleft lip surgery, I was beyond happy. I took her home and followed the procedures they told me and the wound healed very well that you cannot tell she had surgery. In addition, people who saw her before the surgery were amazed and they say it just looks like a birthmark. After her cleft lip surgery, she can eat properly but still, her palate was challenging as food come through her nose sometimes and she struggles on making full sentences when she speaks.

Is she currently attending school?

No, she is not at the moment, but I am planning on sending her next year after her surgery.

Do you have other children?

I have another older daughter I have two children, including Selam.

What is your wish for her when she grows up?

In the future, I hope she attends her school and becomes what she desires. I am very grateful for the coordinators of the programme who have helped me through the process starting from Debre Berhan they were very helpful and considerate of our situation so again thank you very much.

Finally, if you have anyone you want to highlight, here's your chance!

I really what to thank Mr. Nigatu he was the one who helped me a lot. I have also taken her to Debre Berhan before and he was very understanding and cooperative. Thank you all for your help.

Have you gone to other areas for the surgery before?

Yes, I have taken her to Debre Berha. When we reached Debre Berhan hospital, she had a cold and sore throat and they could not operate on her. Therefore, I took her back home. Moreover, before that, I took her to Addis Abeba when she was just born and they told me that she was too small to have the surgery back then. Finally, she received the surgery here at Woldia hospital. And through it, all the coordinators were very helpful and thoughtful may God bless their life.

Links:

https://www.projectharar.org/blog/selam-and-her-mother-recount-their-cleft-treatment-journey-with-project-harar

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