During her 20-week ultrasound, Akosua and her husband, Fernando, were excited to find out the gender of their second child. But they could tell from the ultrasonographer’s reaction that something was not right. The following Monday they received the diagnosis — their baby had spina bifida.
Through research, Akosua learned that Orlando Health was beginning to offer fetal surgery and contacted the Fetal Care Center at Orlando Health Winnie Palmer Hospital for Women & Babies. By the following week, Akosua had an appointment set up and began to go through an extensive evaluation process to see if she and her baby would be candidates for in utero surgery to repair her baby’s spina bifida. Thankfully, they were found to be, and at 25 weeks pregnant, she underwent surgery.
Everything with the surgery went smoothly and at a little over 32 weeks, baby Celeste entered the world at 4 pounds, 10 ounces. Akosua recalls, “when she was born, she cried and did everything a healthy baby was supposed to do.”
After spending a few weeks in the NICU to make sure that everything was OK, Celeste was able to go home at 38 weeks. As she continues to grow, Celeste will be cared for through the Spina Bifida Clinic at Orlando Health Arnold Palmer Hospital for Children. Akosua and her family are grateful for the life-changing surgery they were fortunate to have, and for the remarkable team at Orlando Health for providing them with compassionate care during their journey.
Upon going in for their 20 week ultrasound, Sam’s parents learned that he would be born with spina bifida and hydrocephalus – a buildup of fluid inside the skull that leads to brain swelling. Sadly, the doctors believed that Sam would have brain damage and be wheelchair-bound with no quality of life and recommended that Sam’s parents terminate the pregnancy.
Despite these recommendations, Sam’s parents knew that he would be a fighter if they brought him into this world. Sam was born at Orlando Health Arnold Palmer Hospital for Children and received two life-saving surgeries within the first 24 hours of his life; one to close his back which was open at birth, and one to place a shunt in his brain to remove the excess fluid.
Sam, whose smile lights up every room that he enters, is now a full time “wheeler” as his family calls it. Although he has undergone more than 30 surgeries, he loves the special attention he gets from his medical team. He even prepares his post-surgery wish list that his team uses to make his time there better after each surgery-including chocolate milkshakes.
Today Sam is dual enrolled in college. He is learning to drive and he enjoys working out and listening to his favorite band, Twenty One Pilots. Sam is also training for a marathon with his hand cycle! He is extremely bright, active and can often be found popping wheelies or swimming in the pool alongside his service dog, Ledger.
No child wants to spend time their summer break at a hospital. But for Reefy, who battles Idiopathic Episodic Colonic Dismotality, a condition that causes bowel obstruction and left her in severe pain, Orlando Health Arnold Palmer Hospital for Children became her home in the summer of 2016.
That summer is when Reefy began experiencing symptoms, and while doctors worked to find a diagnosis and eventually provide her with a diverting colostomy bag, she found comfort in the Child Life program. Children’s Miracle Network Hospitals’ funds provide support to the Child Life department which helps patients and their families understand and cope with new diagnosis’ and procedures through medical play, diversionary activities and special events.
Patrick and William were born when their mom was only 26 weeks pregnant. Patrick, born weighing 1.13 pounds, and William, born weighing 1.14 pounds, are surviving triplets, and say they received their fighting spirit from their brother Hunter whom they were blessed to spend 4 days with.
Both Patrick and William underwent cardiac surgery before they were 12 days old. While fighting numerous infections and overcoming several setbacks, the boys spent nearly four months in the Alexander Center for Neonatology at Orlando Health Winnie Palmer Hospital for Women & Babies. During their stay in the Neonatal Intensive Care Unit (NICU), they were in special incubators called Giraffe Beds, which were purchased with funds raised by Children’s Miracle Network partners.
As early as their time in the NICU, the boys underwent physical, occupational, and speech therapy to make sure they hit milestones, but overtime Patrick struggled to eat and gain weight. He was diagnosed with Failure to Thrive at six months old and at 18 months old, Patrick was diagnosed with Periventricular Leukomalacia and Cerebral Palsy. Patrick has had many more procedures and medical complications in his life, but despite the frequent hospitalizations, procedures and weekly therapy treatments that he receives, nothing stops him and his brother from being bright, inquisitive and energetic. William, despite his reduced lung capacity with Chronic Lung Disease, plays competitive soccer, and Patrick has recently relearned to walk and is walking better than ever before!
When Nolan was two weeks old, he was diagnosed with a life-threatening infection called encephalitis meningitis. Attacking his nervous system, the infection severely damaged more than half of his brain. Nolan was airlifted to Orlando Health Arnold Palmer Hospital for Children and although only two out of five infants survive this devastating infection, he was one that beat the odds!
Thanks to Children’s Miracle Network Hospitals, the Pediatric Intensive Care Unit at Orlando Health Arnold Palmer had life-saving equipment, like a ventilator, to help him survive until he could start breathing on his own again. CMN Hospitals helps purchase machines like this so that hospitals have what they need when kids need it most.
When a newborn needs to receive care in the Neonatal Intensive Care Unit (NICU) at Orlando Health Winnie Palmer Hospital for Women & Babies, parents are told to prepare to hear silence instead of cries in the delivery room. So when Myles’ mom heard her son, Myles, cry after delivery, she knew he was going to be a fighter. Myles weighed just 1 pound, 13 ounces at birth and would spend 54 days in the NICU at Orlando Health Winnie Palmer.
Throughout his stay in the NICU, Myles’ parents remember watching him grasp at a pacifier nearly as large as his face. “His hands were barely the size of quarters and his diapers were like folded dollar bills,” they recall. Every day, they watched as feeding tubes were replaced, listened as nurses discussed blood sugar levels and any increases in feeds, and remember celebrating football season and his first Halloween in the hospital.
In November of 2013, “Miracle Myles” was finally able to go home. Thanks to funds raised through Children’s Miracle Network Hospitals, the NICU at Orlando Health Winnie Palmer had the incubators, diapers and monitoring systems that helped Myles grow strong during the first 3 months of his life. Today he enjoys making treats with mom and dad to take back to his favorite nurses at the hospital.
During her 37th week of pregnancy, Brandi’s was diagnosed with gestational hypertension. For her safety and the health of her baby, doctors induced her and brought baby Matthew into the world at Orlando Health Winnie Palmer Hospital for Women & Babies in March 2010. Two day later, Matthew was diagnosed with a serious case of jaundice which required daily trips to Orlando Health Arnold Palmer Hospital for Children for blood tests and weeks of photo therapy. Then at just five weeks old, Matthew began having seizures and was diagnosed with Epilepsy.
In the five years since his original diagnosis, he now also battles a hearing impairment and has been diagnosed with Cerebral Palsy, Autism Spectrum Disorder, Cortical Visual Impairment, and he is unable to talk. Due to nature of his complex conditions, Orlando Health Arnold Palmer has become a second home to him and his family to receive specialized care on many occasions. Despite this, Matthew is still a happy boy who loves Ninja Turtles!
Maleah was three years old when her parents noticed her swollen glands and grew concerned. After visiting a nighttime clinic and yet another hospital emergency room, Maleah’s primary doctor sent her to Orlando Health Arnold Palmer Hospital for Children for blood work. Her glands were getting bigger and her white blood count was rapidly increasing, and Maleah was ultimately diagnosed with acute lymphoblastic leukemia. After having surgery to insert a broviac catheter in her chest, she began chemotherapy treatments.
The day Maleah’s hair fell out she looked at herself in the mirror and exclaimed, “Mommy, I have a cute head!” At that moment, Maleah’s mom said she realized they would make it through their journey. The caring staff made every effort to make both Maleah and her family comfortable. They are considered extended family and will be loved by Maleah for the rest of her life. Today, Maleah loves to cheer, choreograph new dance routines, facetime her friends and family, and take naps!
At three weeks old, Makaylah was admitted to Orlando Health Arnold Palmer Hospital for Children after she experienced difficulties drinking that caused her to struggle breathing, sometimes even turning blue. Doctors discovered severe reflux going into her lungs and performed her first major gastrointestinal surgery when she was four weeks old. To prevent reflux and to protect her lungs, Makaylah received all of her nutrition through a feeding tube for the first year of life.
Before she was two years old, she began experiencing life-threatening grand mal seizures which stopped her from breathing and Makaylah’s journey became one new diagnosis after another.
Overtime, Makaylah was treated for immunodeficiency, epilepsy, migraines, a GI motility disorder, obstructive airway disease, osteoporosis, a cyst in her brain, and muscle weakness – just to name a few. She was ultimately diagnosed with a mitochondrial disease – a diagnosis that finally pulled all of her medical complications together.
Despite the internal battle that she faces, Makaylah is a typical teenager who loves to swim and ride her bike. She is still on a path of balancing all of her health issues and fighting through the struggles, but she is thriving! From the Child Life program that keeps her spirits high when she is in the hospital, to the Critical Care transport team that intervened early on, donations from Children’s Miracle Network to Orlando Health Arnold Palmer have had a direct impact on the quality of care Makaylah has received and on how well she is doing today.
At just 20 weeks pregnant, Jennifer, Lucas’s mother, received the news that no parents wants to hear. Her son, Lucas, was detected having a congenital heart defect (CHD) via ultrasound and as soon as he was born he would have to be rushed into surgery.
Lucas ended up being transferred from Orlando Health Winnie Palmer Hospital for Women and Babies to Orlando Health Arnold Palmer Hospital for Children at just 3 days old to have his first of three open heart surgeries. He was officially diagnosed having Hypoplastic Left Heart Syndrome, which translates to being born with half a heart. Lucas endured two more open heart surgeries, one at four months old, and the final surgery at two and a half years old.
Lucas has had additional procedures done since this time, and has been a patient at Orlando Health Arnold Palmer for over a decade now. Dr. DeCampli was the surgeon who saved Lucas’s life, not once but all three times. Today, Lucas and his family are advocates for CHD, going to various events and rallies stretching as far as Washington, D.C. to raise awareness about the severity of CHD.