Be gentle...this is my first time =)

Well, what can I say? I decided to start a blog. It’s not  that I am naive enough to think that I have anything of great importance to say, only that perhaps some of the experience I have gained along the way may be of use to others. You see, I am the parent of  a special needs child. It seems there are so many of us out there, but it’s not always easy to find each other, or to open up and share. It has not been an easy journey, and I have learned a lot along the way. Laughter is my coping mechanism. =)

I guess I should start by giving everyone a little background information. Matthew was born in September 1993. It was a perfect pregnancy with no complications. They induced labor 4 days after his due date. Labor was easy, again, no complications.

Everyone had left to get some lunch, the doctor had said it would be a couple of hours. However, Matthew had other plans, and made his appearance while everyone was gone. I can still hear the silence in the room when he was born. The doctor said “cleft lip and palate.” I knew what that was but was still shocked. How could there be anything wrong with my baby? I calmly asked the doctor what he said, and he repeated “your son has a cleft lip and palate.” He tried to lighten things by saying a lot of people were born with them, even celebrities. Things started to get a little crazier in the room, I knew it was more than just the cleft. All I could think about was Mike coming back in the room and having to tell him. Sometime in the  few minutes after Matthew was born, Mike did come back, and honestly, I do not remember how I told him.

They took Matthew to the nursery and the news got worse. We were told there was something wrong with his eyes and with his ears, and that he was having trouble breathing.  They had contacted Arkansas Children’s Hospital and a helicopter was on the way. I had a few minor complications after delivery and was scheduled to have a tubal ligation the next day, so they were trying to get me ready, x-rays and lab work.  The doctor came in and asked me if I was sure I wanted to have my tubes tied, just in case.  Just in case….I knew what he meant. Just in case Matthew doesn’t make it. The helicopter was on the way and they were going to take me to x-ray and I still had not held my baby….I had not even seen him. My mom put her foot down and said “she isn’t going anywhere until she sees him.” So they brought him in to me in an incubator. I got to reach my hand in and stroke his back, then they took him away. The nurses in the nursery were so precious. They took pictures for me. They knew he might not make it, but I still had not accepted the thought.

The next morning, Mike, Cody and Mike’s mom left to go to  the NICU at ACH in Little Rock  for Matthew. My mom stayed with me while I had surgery. All day long, the news got worse: heart defect, hole in his brain, eyes and ears have problems. I felt helpless. It was several days later that Matthew was diagnosed with CHARGE Syndrome. According to  http://www.chargesyndrome.org/, “CHARGE syndrome is a recognizable (genetic) pattern of birth defects which occurs in about one in every 9-10,000 births worldwide. It is an extremely complex syndrome, involving extensive medical and physical difficulties that differ from child to child. The vast majority of the time, there is no history of CHARGE syndrome or any other similar conditions in the family. Babies with CHARGE syndrome are often born with life-threatening birth defects, including complex heart defects and breathing problems. They spend many months in the hospital and undergo many surgeries and other treatments. Swallowing and breathing problems make life difficult even when they come home. Most have hearing loss, vision loss, and balance problems which delay their development and communication. All are likely to require medical and educational intervention for many years. Despite these seemingly insurmountable obstacles, children with CHARGE syndrome often far surpass their medical, physical, educational, and social expectations.”

CHARGE
C - colobomas of the eyes. A coloboma (also part of the rare Cat eye syndrome) is a hole in one of the structures of the eye, such as the iris, retina, choroid or optic disc. The hole is present from birth and can be caused when a gap called the choroid fissure between two structures in the eye, which is present early in development in the uterus, fails to close up completely before a child is born. The classical description in medical literature is of a key-hole shaped defect. A coloboma can occur in one or both eyes. Matthew has colobomas in both eyes. They affect not only his pupil  but also the choroid and optic disc.  He also has microphthalmos, or small eye.


H - heart defect. This can be any heart defect, from some very minor to something life threatening. Matthew was born with an Atrial Septal Defect, or ASD. Atrial septal defect (ASD) is a congenital heart defect in which the wall that separates the upper heart chambers (atria) does not close completely. Congenital means the defect is present at birth. These defects do not usually close on their own as some do, and we were told he would need surgery around age 2 or 3.

A - atresia of the choanae. Choanal atresia is a congenital disorder where the back of the nasal passage (choanachoanal atresia on the  left side.

R - retarded growth and development. This is kind of self explanatory.  Children with CHARGE do not grow or develop at the same rate as other children.

G - genital abnormalities. This also includes anything associated with urinary functions. Matthew was born with very small kidneys as well as vesicoureteral reflux. It basically means that his bladder caused urine to go back into his kidneys, which caused infections. His was not severe enough to require surgery to repair.

E - ear anomalies. Again, this can mean almost any kind of defect that affects the ears or hearing. Matthew has no hearing in his right ear. He has very little in his left ear. He has stenosis of the ear canal on the left side, meaning it is very narrow. He also has defects that affect his inner ear which cause balance problems.

Along with the defects listed that make up CHARGE Syndrome, Matthew also has facial palsy, and swallowing problems due to a cranial nerve abnormality. He has had a gastrostomy tube since he was 2 weeks old. 

It is kind of overwhelming trying to give all of this information at once. I have so many thoughts that I want to share, but it is not always easy for me to put my thoughts into words. Remembering has made me sad, and I prefer stay happy, so I am going to stop for today. I will try to post something every day and if anyone has questions, please do not hesitate to ask.





Laughter gives us distance.  It allows us to step back from an event, deal with it and then move on.  ~Bob Newhart