Luisa’s Story
This story is about the birth of my daughter, Luisa. She was born at 25 weeks, or five and a half months, weighing only 1lb 12 ½ oz. In some states the doctors are not even required to try to save babies born that early. Making it through day one was a miracle in and of itself. Giving little hope for her quality of life, the doctors informed us that she may never walk or talk, and would most certainly have a difficult road ahead. This was no doubt scary, but we had to be strong and push forward. Her life depended on it.
She began fighting for her life the moment she was born, and has not stopped fighting ever since. Her lungs were underdeveloped, her skin was transparent, and she developed a brain hemorrhage. At ten days old she underwent heart surgery. With a fighting spirit, she was determined to prove the doctors wrong. On day thirty-two of her stay in the NICU (Neo-natal Intensive Care Unit), still barely 2lbs, she repeatedly pulled the ventilator tubes out and began breathing on her own. This was a big surprise. A clear sign her will to live was strong. She continued to “break the mold” as doctors would say, healing faster than expected, recovering better than expected, and persevering against all odds.
After spending seventy-seven days in the NICU, we were finally home, but her struggle was in no way over. She had bi-lateral hernia surgery at six months old, and at eight months old she was diagnosed with Hydrocephalus. A shunt was placed in the front left part of her brain. Yes, brain surgery at eight months old! And later two more brain surgeries when she was two. Physically her development was slow. Knowing she needed early intervention, when she was eighteen months old we moved to Orlando, FL, where we enrolled her in United Cerebral Palsy, a charter school for children with disabilities. Within six months her physical development began to improve, and she was sitting up, rolling over, and lying on her stomach for the first time. As she began to become mobile, we noticed the right side of her body was weak. We learned that the hemorrhage on the left side of her brain caused brain damage, and then Hydrocephalus, affecting the right side of her body. At this time she was officially diagnosed with Cerebral Palsy. Again, she was determined not to let this stop her. She would do what I call commando crawl, pulling her entire weight across the ground with just her left arm. Then came walking on her knees, no matter what, she was going to walk.
Luisa’s body was working against her, and she just kept fighting back. She began having seizures when she was four. Shortly after that she had a surgery on tendons in her thighs, after which she was able to walk with a walker. The most exciting moment of all was when she began walking on her own at five years old! First it was just ten steps, but within a few days there was no stopping her, miraculously she was walking everywhere! The doctors eventually stopped telling us what they thought would happen, as she was not typically developing like a child with her conditions would. She had another surgery on her right leg when she was eight years old. They broke her right femur to reposition her leg and hips, and she was in a body cast for six weeks. After the cast was removed, she had to learn how to walk all over again. But she fought and worked hard to recover quickly, and was out of her wheelchair within six months. Also at eight years old, she had two surgeries on her right arm to improve the functionality. Although the surgeries on her arm helped a little, it was mostly cosmetic. She still struggles with being unilateral and has limited use of her right hand.
Luisa’s fight will never be over, but despite these obstacles, and the doctor’s doubts, she has faced every trial with a resilience and perseverance that is unmatched. Proving to be an inspiration, she never allows her disability to limit her ability, and finds a way to do whatever she wants. She began dancing when she was five in a dance therapy class, then later a regular dance class, working hard to keep up no matter what. She has done horseback riding, participates in acting classes/workshops, has appeared in a public service announcement, and even worked a little with a talent agency doing textbook photography work. There is no stopping her. She is going to live this life to the fullest. I am honored to be the parent of a living miracle.
