Noordhoff Craniofacial Foundation helps children with craniofacial conditions

Noordhoff Craniofacial Foundation helps children with craniofacial conditions

2023-01-17

Every year, there are more than 300 children born in Taiwan with craniofacial condition. The Noordhoff Craniofacial Foundation in Taiwan aims to help people with craniofacial problems by providing training, rehabilitation, as well as scholarships. FTV reporter Stephany Yang takes us to meet some of the people they assist.

Chen-chen has a rare craniofacial condition called Goldenhar syndrome, which affects the development of his eyes, ears, and spine. Since he was 3 months old, Chen-chen has had problems with breathing and eating.

Chen-chen’s mom
After he was born, I found that he had many problems. The main issue was that he had trouble drinking milk. He couldn’t drink milk on his own, and if he took deep breaths, his face and body would turn black. This situation lasted for three to four months. Every day I wouldn’t dare sleep. The lights in the house were turned on 24 hours a day so that I could check on him and make sure he was alive.

Due to his mother’s perseverance and the assistance of the foundation, Chen-chen is nowdoing much better. Now 3 years old, his breathing has improved, and he has switched from attending special education class to regular class.

Chen chen’s mom
Now his breathing has improved. He currently relies on a respirator to sleep. The foundation checks up on us and shows such understanding. They even found us a doctor at Linkou Chang Gung Memorial Hospital, so we traveled there from Taichung for a series of examinations. Chen-chen is now 3 years and 4 months old. These past few years, the foundation has helped us get in touch with people, helped find rehabilitation classes, and assisted us in adjusting mentally to our role as caregivers for him.

There’s also Yang-yang, from Yulin. He was born with a cleft lip and a palate, and underwent two surgeries before he was even 1 year old. With the help of the foundation, Yang-yang sought speech therapy. Now 3 years old, Yang-yang has shown great progress, and he can now say a few words.

Yang-yang’s father
He would keep crying in the middle of the night and not be able to sleep. Foundation staff would come to the house to help with putting on his nose molds, and help us with his special feeding bottles and pacifiers. Since starting speech therapy, he can now pronounce the sounds for “b,"“p”and "m.” He can also now say “good,” “no” and “mom” in Mandarin.

The Noordhoff Craniofacial Foundation was founded by Dr. Samuel Noordhoff in 1989, in hopes of helping congenital craniofacial patients receive holistic care and medical treatment as well as educate the public about the condition. The Noordhoff Craniofacial Foundation provides training for family members and respite caregivers. In addition, the foundation also arranges summer camps, scholarships, and grants for affected children.

Chen I-ling
Noordhoff Craniofacial Foundation
Since the establishment of the foundation in 1989, there have been more than 15,000 children with craniofacial conditions that have registered with us. We serve about 1,500 children and adults who have been with us for many years. Our services are split into different stages, and we provide services both during pregnancy, and shortly after birth. As the child grows older, we will arrange a follow-up plan.

There are more than 300 children born with congenital craniofacial anomalies in Taiwan every year, including cleft lips and palates, microtia, and other congenital craniofacial conditions. The foundation hopes to continue to support these children and their families. They also call on more people to donate to help support the families.

台灣羅慧夫顱顏基金會幫助顱顏兒平安長大

2023-01-17

台灣每年有超過300名顱顏新生兒。台灣羅慧夫顱顏基金會透過提供培訓、康復計畫和發放獎助學金，來幫助他們健康長大，一起來認識他們。

3歲的顱顏兒宸宸患有罕病「高登哈氏症」，影響眼、耳、脊椎的發育，甚至有呼吸與進食的問題。

[[宸宸媽媽]]
“出生之後，發現他問題非常非常多，最主要的首要問題是他不會自行喝奶，再加上說他一要用力呼吸，大口吸氣，他就會臉色發黑，身體發黑。所以這情況持續3到4個月，我幾乎是每天不敢睡，然後每天家裡的燈是24小時開著，隨時去檢查孩子的狀況跟生命"

在母親的堅持和基金會的幫助下，宸宸現在狀況進步許多，3歲的他，除了呼吸狀況好轉，還從特教班轉為普通班。

[[宸宸媽媽]]
"現在對於呼吸有好轉了，他目前來說依靠呼吸器睡覺，藉由基金會的詢問、了解，甚至安排醫生，然後我們就從台中北上來，到林口長庚做一系列的檢查，到目前為止，宸宸已經3歲4個月，這段時間基金會除了積極幫我們追蹤聯繫，復健上課，幫忙照顧者心態調整"

而居住在雲林的揚揚，出生時就患有唇腭裂，1歲前接受了兩次手術，在基金會的幫助下，揚揚進行言語治療，現在揚揚3歲，已經可以說出幾句話了。

[[揚揚爸爸]]
"半夜都會一直哭，沒辦法睡覺。基金會及喘息服務員會來到家裡，幫忙帶鼻模，也要有特色的奶瓶跟奶嘴。語文治療後，他現在會ㄅ的發音、ㄆ發音、ㄇ的發音，還會講"好"、"不要"、"媽媽"

羅慧夫醫師於1989年創立羅慧夫顱顏基金會，目標是要幫助先天性顱顏患者獲得醫療服務，並讓大眾了解這項疾病。除此之外，也提供家人和喘息服務員培訓，更為孩子們安排夏令營，提供獎學金和助學金。

[[羅慧夫顱顏基金會執行長陳依伶]]
“基金會從1989年成立到現在，大概我們登記在案顱顏的孩子，其實已經有超過15000位。我們每一年，大概現在在長年服務的小朋友跟大人，大概是在1500位孩子左右。我們的服務是階段性就是說，在剛剛出生的時候，還是在產前懷孕之前的時候，我們會密集的服務。隨著孩子的年齡增長，我們安排追蹤的計畫”

台灣每年有超過300名顱顏新生兒，包括唇顎裂、小耳症等患者。羅慧夫顱顏基金會希望繼續支持這些兒童及其家人，也期待各界慷慨解囊，一起讓顱顏患者能夠平平安安長大。

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Pan Men-an
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Kuo Li-yuan
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