Tag: Spina Bifida

Hollie Stephens Fight With Spina Bifida

Hollie Stephens
Spina Bifida

While pregnant with my daughter, Hollie, I found out she had Spina Bifida.

I started reading everything I could about it. I came to first Step and borrowed a book about Spina Bifida. I also inquired of services at First Step. I was told when she was ready to come home to call again and we would set up services for her.

Hollie was born prematurely at 29 weeks. She was med-flighted to Little Rock immediately. My doctor gave me a day to live due to the toll severe toxemia had taken on my body. Two days after she was born I was released from the hospital and went straight to Little Rock. At four days old Hollie was given a week to live. The doctors told us IF she survived she would be a complete vegetable. So I made the devastating decision to let her go. She was only on nose canal tubes but even these were removed and the doctors began letting us hold her.

I can still remember sitting up with her until 3 and 4 in the morning, holding her—thinking this would be the last time I would hold her. Not true.

Hollie is a fighter and had a lot of people who were standing behind her and praying for her. Hollie went through many hard times. She almost died a couple of different times. Through all these times, Hollie had love. She was held and talked to often. Hollie came home when she was 4 months and 10 days old.

Before coming home I went to First Step and filled out all the paperwork. It was set up for Speech to meet with her as I had a swallow study scheduled for her (she was on a silent aspirator so she had been given a G-tube to be able to go home) and I wanted to be sure I did everything possible to help her pass the study. She didn’t pass, but I didn’t lose hope. When first tested by First Step, Hollie could not pass anything. Now Hollie is leaping and bounding. She just started crawling. She can drink as long as it is mixed to nectar consistency. She has started eating table food and cheerio/fruit loops. She is such a joy.

First Step has helped us so much. They have shared my joys and also my frustrations. Some from there have come to see us when Hollie was put in the hospital. They always let us know that they care and take time to listen to us. I don’t know what I would have done this last year and a half without the training First Step has given me. They have offered me encouragement and extended their friendship.

From the therapist to the secretaries to the director—all stop to say hello and to ask how we are and to get to know US—not as case files, but as people. We all have children with special needs and one of the things we need the most is to know we are not alone. There are others that care.

Other families are also facing difficult situations. Knowing there is a program such as First Step has been wonderful. Hollie has come such a long way. Our whole family has come a long way. We have learned a lot and have drawn together more than ever.

– Carrie Stephens