I have left out one key piece of information that helps tie everything together. This might help those of you wondering about Hannah's situation. Early on in the process one of the many doctors that we talked to mentioned that Hannah might have CHARGE syndrome.
CHARGE is an acrynome for (C)oloboma - vision impairment, (H)eart defect, (A)tresia of thenasial choanae - undeveloped nasal passage way, (R)etardation of growth and/or development, (G)ential and/or urinary abnormalities, and (E)ar abnormalities and deafness.
As of right now Hannah has been diagnosed with the coloboma, heart defect, and atresia. She has yet to be diagnosed with deafness and has had a brain and kidney ultrasound which came back negative for any defects so retardation of development and urinary abnormalities have been ruled out. Although she does have several symptoms the doctors aren't able to determine if it is Charge syndrome until Tuesday.
This syndrome is not inherited rather occurs within the child during the earlier stages of the pregnancy. Nothing that happened during the pregnancy is the cause for this change either. It is also extremely rare that a family have multiple children with Charge syndrome. It is said that there is a 0.08% chance of a child being born with this disorder (8 in ever 10,000 babies) and a 1 to 2% chance that a family would have multiple children with Charge.
This last part was taken from a document at http://www.chargesyndrom.org/
Although these children have many problems, they can survive and become healthy, happy citizens. Doctors. visits and medical problems taper off and/or change as your child grows. Keep in mind, every child is different. Accept not knowing and enjoy today while doing what is possible to prepare for the future. NEVER underestimate your child's abilities. Always put the disability second. Be involved, interact and enjoy because, as hard as it may be at times, they grow up fast,
overcome many obstacles, and will make you proud.
We love you Hannah and we are already proud parents of your beauty that you have brought into our lives!!!
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2 comments:
She looks beautiful! We're praying for you and wish you the best.
She's beautiful. We're fasting and praying for you. Let us know if you need anything. Caleb is always welcome here. The boys would have a lot of fun with him. Big or small, miralces still happen.
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