Guest Blog Post
Editor’s Note: I would like to thank Shannon for sharing her Tiny Steps Mommy Tale about her son’s arrival. According to The CHARGE Syndrome Foundation, “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.”
By Shannon Thomas
Brandon was born in the front seat of my husband’s car. I delivered him myself, in front of the hospital, while my husband was getting a wheelchair. At the time, it was a really big deal.
Brandon went to the nursery, due to his slightly out of the ordinary arrival. He was only 5 pounds, but he was 3 weeks early. We thought it was nothing. But then, his blood sugar was dangerously low, and he would not nurse. He was having a hard time maintaining his temperature. He had a heart murmur and some unusual features. One thing after another.It was decided that he needed to go to another hospital. During the transfer, I could not ride with him because the equipment keeping him alive was too big. I had been in physical contact with this little person for 36 weeks and 5 days. Now, suddenly, I could not touch him, see him, comfort him. I wasn’t the one keeping him alive anymore. I had to trust machines. And strangers.
We were informed over the next two weeks that our son was deaf, blind, had a complex heart defect, a hormonal deficiency, and had one of several rare genetic disorders. The fact that he was born in the car was all of a sudden not even on the radar. Eventually, we were told he had CHARGE Syndrome. Scary, and rare. But he would survive. That became the only thing that mattered. We spent 3 weeks in NICU, learning how to care for him, teaching him to nurse, getting used to our new way of life. He had open heart surgery at 6 weeks of age, and has been getting stronger every day since! Brandon is now almost 10 years old, and has a profound effect of everyone he meets. He made quite an entrance, and still likes to be the center of attention.
Shannon Thomas is a mother of four who is dealing with Obsessive Compulsive Disorder and is learning to live an authentic life to bring joy to her family, and sustain her as she cares for them. Shannon writes about this, and more, on Mishmash Mama.
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