Long run with my microtia boy

 Never easy, but we never say no

My baby boy was born with microtia. No any idea how that happened and what we were going to face in the future. As a newborn baby parent, we were panicking.

Microtia happens when the external ear is small and not formed properly. Besides that, otofacial syndrome* and micrognatia** made drinking milk is mission difficult for him. Although it’s been a month, his weight was still 2.9kg (6.3lb), way below the standard 3.4kg (7.5lb) in Taiwan.

                                                                      Long run with my microtia boy

As the trouble absorbing of nutrition that we have taken care, we realized there is something else going to be experienced- developmental disorders. Through the arrangement of Noordhoof Craniofacial Foundation (NCF), he started Early Childhood Intervention (ECI). During it, they found out left hand and leg are the common side for him. For more insight, we were arranged for magnetic resonance imaging (MRI). The research said brain malformations and also sleep apnea has been denoised by doctors.

Hit it again and again by all shock, as his parents, we silenced. Starring at tiny body, with all these problems he never stops to live. What on the earth can we say no to him?

We followed advice to handle the difficulties step by step. Ventilator helps him to sleep at night. Now we finally see our baby boy with enough energy to do activities in the day time. Also, by consaulting with doctors surgeries for my boy’s appearance can be as good as every kids.  

Fortunately, in Taiwan, we have a comprehensive health insurance system and early treatment system. We are also grateful to meet the great medical team and NCF social workers who accompanied me all the way. They provided a lot of information, resources and supports that make me confident about overcoming those situations. Now, 1.5 years of age, he is an energetic boy. In the trip NCF’s family day, we met craniofacial kids and their family. They weren’t shy to share their life story with you.

Raising children is not easy. Many parents may encounter difficulties just like us. Searching for people who can help you is always important and shows you that you are not alone. However, early detection and early treatment will give your children more opportunities for improvement.

                                                                    

* Otofacial syndrome: a rare, genetic developmental defect during embryogenesis syndrome characterized by distinct facial features. Vertebral defects and short stature may also be associated. (Sources from: https://www.orpha.net/consor/cgi-bin/OC_Exp.php?lng=EN&Expert=2792)

** Micrognatia: or mandibular hypoplasia, is a condition in which a child has a very small lower jaw. A child with micrognathia has a lower jaw that’s much shorter or smaller than the rest of their face. (Sources from: https://www.healthline.com/health/micrognathia)

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