The birth of a child is a celebrated event. It's a moment that every mother will never forget... especially mothers blessed with a baby born with a birth defect.
In the first few weeks after my baby was diagnosed, someone told me that they were also a "special needs" parent. Also? That was the first moment that I realized how lifelong this journey would be.
I'm new to this. I don't know all the lingo or politics of being a "special needs" parent. I don't even know if this diagnosis is technically classified that way. What is the criteria for special needs anyway? It doesn't matter. My goal in sharing my son's story... our story... is only to reach out to other parents' looking for a story like theirs. Somehow, finding someone else you can relate to makes this journey a little easier. We're not alone.
This website is a collection of information from our journey. I know how overwhelming this can be. Hopefully, having access to a lot of helpful information in one place will help.
In the first few weeks after my baby was diagnosed, someone told me that they were also a "special needs" parent. Also? That was the first moment that I realized how lifelong this journey would be.
I'm new to this. I don't know all the lingo or politics of being a "special needs" parent. I don't even know if this diagnosis is technically classified that way. What is the criteria for special needs anyway? It doesn't matter. My goal in sharing my son's story... our story... is only to reach out to other parents' looking for a story like theirs. Somehow, finding someone else you can relate to makes this journey a little easier. We're not alone.
This website is a collection of information from our journey. I know how overwhelming this can be. Hopefully, having access to a lot of helpful information in one place will help.
What is VACTERL and Imperforate Anus?
Like many congenital birth defects, VACTERL and Imperforate Anus were two things we'd never heard of until the doctor gave us our son's diagnosis. The internet is full of technical descriptions and many explanations require you to learn so much to understand it completely. I've Googled it to death... here's some excerpts that made the most sense to me:
Imperforate Anus
Imperforate Anus is the absence of a normal anal opening. The diagnosis is usually made shortly after birth by a routine physical examination. Imperforate Anus occurs in about 1 in 5000 births and its cause is unknown.
From ORLive: Pediatric Imperforate Anus Pull-Through Procedure:
Infants with imperforate anus defect have malformations of the rectum and anus in which abnormal development leads to growth of skin over the anus and incomplete development of the rectum.
As a result, these infants have either no opening through which stool can pass, or a very small opening that allows only a small amount of stool to pass out of the rectum. This very small opening is often accompanied by fistulas, which are abnormal channels that connect skin to bowel.
From ORLive: Pediatric Imperforate Anus Pull-Through Procedure:
Infants with imperforate anus defect have malformations of the rectum and anus in which abnormal development leads to growth of skin over the anus and incomplete development of the rectum.
As a result, these infants have either no opening through which stool can pass, or a very small opening that allows only a small amount of stool to pass out of the rectum. This very small opening is often accompanied by fistulas, which are abnormal channels that connect skin to bowel.
VACTERL Association
Also referred to as VACTERL Syndrome, VATER, and VACTERLS.
From the Cincinnati Children's Hospital Website:
VACTERL or VATER association is an acronym used to describe a series of characteristics which have been found to occur together.
V stands for vertebrae, which are the bones of the spinal column.
A stands for imperforate anus or anal atresia, or an anus that does not open to the outside of the body.
C is added to the acronym to denote cardiac anomalies.
TE stands for tracheoesophageal fistula, which is a persistent connection between the trachea (the windpipe) and the esophagus (the feeding tube).
R stands for renal or kidney anomalies.
L is often added to stand for limb anomalies (radial agenesis).
Babies who have been diagnosed as having VACTERL association usually have at least three or more of these individual anomalies. There is a wide range of manifestation of VACTERL association so that the exact incidence within the population is not exactly known.
From the Cincinnati Children's Hospital Website:
VACTERL or VATER association is an acronym used to describe a series of characteristics which have been found to occur together.
V stands for vertebrae, which are the bones of the spinal column.
A stands for imperforate anus or anal atresia, or an anus that does not open to the outside of the body.
C is added to the acronym to denote cardiac anomalies.
TE stands for tracheoesophageal fistula, which is a persistent connection between the trachea (the windpipe) and the esophagus (the feeding tube).
R stands for renal or kidney anomalies.
L is often added to stand for limb anomalies (radial agenesis).
Babies who have been diagnosed as having VACTERL association usually have at least three or more of these individual anomalies. There is a wide range of manifestation of VACTERL association so that the exact incidence within the population is not exactly known.