I am a mother of four children. My youngest child, Mikarah, was diagnosed with feeding difficulties, better known as failure to thrive, at about 8 weeks of age. She was born at 35 weeks and it was a pretty normal pregnancy. I breastfed, but she was not gaining weight.
The first thing doctors do is try different kinds of formula or to make the formula high in calories. In my daughter’s case, she still was losing weight. We were sent to a GI doctor to get a better understanding of why she could not gain weight. She was diagnosed with aspirating and laryngomalacia, which means floppy airway. Therefore, by this time, they place an NG through her nose to go to her belly. They reinsured us as parents that she will be able to feed and get all her nutrition and she should gain weight.
We tried this solution and it did not work. After she turned four months, she was pulling out the tube and pulling the tape from her face. This was a very emotional and overwhelming time in our lives, trying to understand what her condition is and what will be the best and safe solution. It almost feels as if you become an overnight nurse. You have to learn how to place the NG, how to remove it, and how to bandage it down. I spent a lot of time at the hospital, staying the night, and waiting for the lab to do more blood work. It is a very long process. We made trips to the hospital to see our family doctor, the new physician, and the GI. We were trying to find the reasoning of this failure to thrive while having NG placed. In our case, the next phase of this is the G tube or Mickey button.
We live in Indiana. We were seen at a different hospital several times. The doctor comes to our room. They said they have done all they could and the next phase would be placing a Mickey.
I, as a parent, had no idea what a Mickey was and to have a small 4-month-old child go through surgery to me was scary. Then, to tell me I don’t have a choice was even scarier. At that time, I didn’t have any resources on what a Mickey was. I didn’t have enough time to consider whether or not my child really needs to have this. So, I asked to discharge my child out of ICU to get a second opinion at a different hospital, 3 hours from where I live. The staff contacts Child Protective Services because pulling a child out against medical advice is not suitable.
Because my child was a failure to thrive patient, she was detained. My child was not on the growth chart, so she was considered malnourished because she was not gaining weight at the hospital or at home. Despite this, CPS still felt the need to interfere and I was charged with four counts of child neglect and child endangerment.
Remind you, as a parent I have the right to seek better or other treatment that is in the best interest of my child. They detained my child and sent her to the original hospital to give their opinion on her condition. By this time, I am in court fighting these charges and hiring a lawyer. Long story short, I was able to get all charges dismissed and was cleared from these charges. The courts found these charges unsubstantial. By this time, my daughter had a G-tube placed she and she started gaining a few ounces a week.
My daughter just turned a year old. She’s only 16 lbs. and it has been a very slow process. I don’t want my story to discourage parents. Instead, I hope that my story could help someone better understand his or her options as a parent and that you never forget that you are your child’s voice.