Sharon

Mom to John Thomas Chatham III

Born on March 23, 2009

Became an angel on April 4, 2009

Marietta, Georgia

When I was pregnant, I began to acquire too much fluid in the womb. They were not able to locate all of his heart parts on ultrasound which concerned them that he might have a heart defect. My water ruptured prior to 34 weeks but fully broke at 34 weeks. When he was born he was gray and not breathing due to the CHARGE-associated nasal problem. His heart also had a valve that was twisted. We were expecting at least two surgeries. He had a small penis and malformed ear as well. These are all symptoms that are grouped under CHARGE Syndrome. We waited for over a week for a bed at the local children’s specialized hospital and were very hopeful when he got moved.

After getting his testing there they sat us down and we inferred that we had not heard the entire story. When he was born, they tried to get him breathing on his own for 90 minutes which is unheard of. At that time his major organs were not getting any oxygen which led to bleeding of the brain and kidney failure. He had a few more tests that did not turn out much better so that’s when made our decision. He was on a million machines and not breathing on his own. There is no way we would want this kind of life for ourselves; multiply that by infinity, and that’s how much we did not want it for our son. They think that one of his genes mutated in utero which has nothing to do with John or I; just a fluke. That is hard for us to swallow because we are both secretly blaming ourselves- especially me, who was his primary care giver for seven and a half months. There is a 1% chance that this will happen again, but that is a HUGE percent for parents who have already gone through this. We are scared to put another kid through it. Hopefully our genetics testing will set our minds at ease and when/if we get pregnant again, there will be special maternity care in my case. We want our own children but not at the risk of this happening again.

The geneticist called us to discuss the results of my DNA testing. It turns out that Trey had a heart defect from me which would not have been severe. This may or may not have led to CHARGE symptoms; we are not sure. They might be two isolated conditions. Since it is not an inherited trait in either of our families, the chance of this happening again are slim to none. 

Sharon blogs at http://www.angelsteps.net.

She can contact her at treysmommy@angelsteps.net.

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Comments

  1. lani says:

    i’m so, so sorry you lost your sweet boy. :’( our son was stillborn – another 1% case, and you’re totally right. suddenly reassuring statistics are totally meaningless. thank you for sharing john thomas’s story.

  2. Niki Martin says:

    I also lost my child to CHARGE syndrome. She was born on Nov 18, 1998 and passed away on June 12, 1999. She never left the NICU. It is so hard.

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