A happy baby through all of the trials

She was born 11/28/2002 (Thanksgiving day). She was 3 weeks early, but a healthy 7 lbs 11oz 19 inches long. When I delivered, they did put oxygen on her for a little bit (cord was around her neck) and it was clear she had bilateral club foot which never showed up on the ultrasounds. The Dr did ask about my placenta and said he was sending it off for testing, but I didn't think anything of it.

In January 2003, we were having casts/surgery done on her feet. During this time, a CAT scan was done - hydrocephalus. We were at the hospital to have the shunt put in when it was discovered she had a heart condition -dilated cardiomyopathy. She was placed on oxygen, which she never came off of, and all kinds of meds for the different conditions, but we were going in the right direction.

Over the next several months, Autumn began being constipated, her stomach was extended and hard - she looked pregnant. I fought with her pediatrician about the problem, but he didn't want anything to do with it, obviously Autumn already had too many problems. I was eventually able to get a Dr to do an ultrasound-fluid.

She had surgery in October, with the thought her body wasn't absorbing the fluid from the shunt, and the Dr drained 48 ounces of fluid from her abdomen. The next day the fluid was back, with the shunt draining into a bag, so now what?! Many different tests (blood, muscle bodies, skin biopsies, etc) and we finally got a diagnoses on her first birthday - GM1. The 51st case, no treatment, no cure, she won't live past she of 2 we were told. What are you saying to me?!? Shortly after that, she had a feeding tube put in. Not much changed with the new diagnoses. Her last day with us 2/18/04, she was having seizures. I feel that was the most torturous day, for everyone. She looked like she was hurting so bad.

During her life, she did have physical therapy, speech therapy, and a vision specialist come out to the house to work with her. She never sat, held her head up, or rolled over. She was a very happy baby for having to go through all of this. She had a total of 14 surgeries and about a dozen meds around the clock. We knew if she cried, there was definitely something wrong.

After she passed, talking about her and the disease helped me 'move on'.

Last Updated: March 2016