Voices of Florida. Made possible through the generous support of the Gidel Family Foundation.

Teresa’s and Lesly’s Story: A Place called Patches

I remember the day as if it were yesterday. October 13, 2005, was the day my life changed forever. I was only sixteen at the time, and scared out of my mind. Me? Teresa Delatorre, still in high school, enrolled in advanced placement classes, with my entire future ahead of me? I could do anything, be anything, and here I was in a hospital bed giving birth to my little Lesly. I was just twenty nine weeks pregnant and it was one of the scariest experiences I have ever had to endure.

At twenty -four weeks, my gynecologist diagnosed me with placenta previa and explained to my mother and me that the best decision would be to terminate; that I ran the risk of hemorrhaging during birth, losing Lesly and my own life. My mother agreed with him, but I simply told him that while I understood the risks, there was no way I was going to abort my baby. How could I? I had already felt Lesly moving inside me. I was way too emotionally attached to her and although I hadn’t met her yet, I already loved her. I was taking my chances.

I was on full bed rest for the remainder of my pregnancy and wasn’t allowed to attend school. My school counselor brought me my class work every Friday so that I would keep up with my classes and my grades wouldn’t deteriorate too badly. I was an honors student, in advance placement classes. Now I was stuck in bed all day by myself, worrying about school, about losing my friends, disappointing my parents, and most importantly, about endangering my life with this pregnancy. I tried to stay positive, but that got harder with every passing day, little anticipating the trauma that was about to unfold.

Early one morning at just 28 weeks, I went into labor. I was rushed by ambulance to Jackson and medicated. Two hours later the contractions stopped and I began to stabilize. Two days later my doctor decided to send me back home.

Just minutes before I was about to be discharged, my placenta ruptured; there was blood everywhere. My little Lesly wasn’t receiving much oxygen inside of me and I had to deliver her fast. As much as I tried to remain calm, I panicked and I could no longer hold back the tears. I was scared, nervous, worried and exhausted all at the same time. I prayed that Lesly would pull through.

Ten minutes later I gave birth to a beautiful baby girl weighing only 2.4 pounds. Lesly and I had survived and so I naively thought that the worst was over, that from there on out things were only going to get better. I wasn’t ready for what I was about to find out.

Lesly was born with a form of arthrogryposis, a serious skin condition that doesn’t allow her to bend her fingers or wrists. She was also diagnosed with acute asthma and two weeks later her skin started breaking out with lesions. The doctors informed me that Lesly’s skin disorder was so rare, that none of the doctors had seen it before.

How was I going to manage all of her medical needs, manage being a student and a mother? How was I going to graduate from high school now? My entire life was changing right before my eyes. I cried because I feared what would become of my life, not once thinking about the challenges Lesly would have to endure. At that moment, all I cared about was myself, and the new struggles that lay ahead for me. Right after the devastating news of her diagnosis, I watched Lesly as she slept. I stuck my hand in the incubator to feel the soft warm touch of her hand, and all of a sudden she grabbed my finger and held it tight. She looked so peaceful, as if nothing in the world could ever trouble her. I knew then that this was no longer about me, but about my little Lesly and doing what ever was in my power to give her the care that she needed.

Five months and many daily blood tests, later, Lesly was discharged from Jackson, without an accurate diagnosis of her skin disorder. It had been an exhausting five months of juggling school and rushing home to find a ride to visit my baby. They say when a mother takes her baby home for the first time it’s one of the most exciting and joyful times ever, but for me it was yet another one of the scary things I faced. I was a teenager with no nursing skills, and I didn’t know how to be a mother, let alone be a mother of a medically fragile child with a G-tube and a trach. A couple of days before Lesly’s release I shared my fears with my social worker. She gave me two options. I could choose to have a nurse at home to help me care for Lesly or I could take her to a nursing center for medically fragile children, near my home called Patches. If I chose the nurse at home I would have to be home with the nurse at all times and would have had to drop out of school. If I chose to take her to Patches, I feared Lesly wouldn’t get the proper medical care, nor the love and attention she needed. At this point my life was focused on my baby and if it meant dropping out of high school, then that was what I was determined to do. The social worker suggested visiting Patches to get a feel for it -- to at least give it a try. I was stubbornly set on hating the place.

I walked into the facility unannounced and suspicious. But all I could see were smiling kids all around me. A nurse in a corner fed a small boy as she played airplane with him to get him to open his mouth, while another was getting respiratory therapy. The kids looked happy. You would never have known that these were seriously ill children by their smiles. I observed a nurse dressing a little girl’s wounds, being gentle so as to not hurt her and cheering when she was done for behaving so well. The little girl smiled and gave the nurse a huge hug. I knew then in my heart that Lesly would be very well taken care of at Patches and was going to receive all the quality medical attention she would need. I felt a wave of relief pass through me and for the first time in many months I felt at peace. Three days after her discharge, I brought Lesly to Patches. I met the directors, and little did I know that they would be my support system, standing beside me through many rough patches. With Lesly at Patches, I could begin to think about school and graduating. Life at Patches would be our new normal.

Because I knew that Lesly was treated with love and that all of her medical needs were being met at Patches, I graduated from high school with honors, with my class, and enrolled at Miami Dade Community College.

In October we celebrated Lesly’s seventh birthday at Patches, and this fall I will graduate with my Bachelor’s degree in criminal justice. I could not have achieved this without being able to drop Lesly off at Patches early each day, know she would get her daily therapies and have the peace of mind that came from knowing that Lesly has been as happy as she could ever be. I love that she feels safe there. Lesly is affectionately known as “the princess of Patches” because she has managed to conquer everyone’s heart and rules the roost. They are our second family.

I share my story, because sadly, Patches is one of the best-kept secrets. I know first-hand how hard it is to take care of a child with ongoing medical needs and keep your life on track. I want parents of children with long-term medical needs to know that they are not alone. Many mothers put their lives on hold because they aren’t aware of the services that Patches offers sick children in the community. I hope that by sharing my story, other families will benefit from this wonderful community resource. There is help. Let Patches be the light in a very difficult time in your life, as they have been for Lesly and me.

Patches is a non-profit organization and every donation made is not only greatly appreciated but also greatly needed. Lesly and I thank the dedicated staff at Patches, along with the all of the volunteers and donors from the bottom of our hearts. We are grateful for everything that they continue to do for us on a daily basis. From helping schedule doctors’ appointments, to answering any of my questions, to holding my hand and visiting Lesly at the hospital when she took ill and we nearly lost her, and just being there for support when I’ve needed them the most, we thank you. I found everything I was looking for in a place called Patches.