- Posted June 24, 2014 by
This iReport is part of an assignment:
Raising a special needs child
Olivia, Fragile Yet Fiesty
The internet has played a major role in Olivia’s health by offering new resources for medical treatments and the support of other families living with OI. Burka, who admits the journey has been one of great joy and frustration said, “The love you have for your child makes everything workable. You learn to advocate and educate yourself. You concentrate on the blessings and not the challenges as much.”
- taliaday, CNN iReport producer
Twenty four hours passed and Olivia and I were released from the hospital with a clean bill of health. Olivia was a pleasure to care for and certainly a pleasant baby but while visiting my parents I noticed something wasn’t quite right. It seemed when Olivia was crying her chest felt strange. Fortunately we were scheduled for a follow up appointment with our pediatrician the next day and I made a mental note to speak to him. Thank heaven Dr. Warren Day had known me for 17 years from caring for my older daughter Justine, otherwise the outcome of that doctor visit could have been even more traumatic that it already would be.
Dr. Day, my husband and I had to strip Olivia down to her diaper to get her to cry. I needed to show the medical staff why I was concerned and getting Olivia to cry was a challenge. From birth she was a very easy going baby who gave us little trouble. I explained to the doctor that when she cried her chest felt “crunchy” for a better word. At this point my family thought I was experiencing postpartum depression. However, once the cries began the doctor felt and saw my concerns.
We were sent immediately to the hospital she where she was born and an x-ray of her chest was performed. I was numb and frightened. Outside of my husband no one knew what was going on.
The x-rays were taken and we were sent home to wait for the results. It didn’t take long to get a phone call. Olivia had multiple (13) rib fractures in multiple stages of healing. Thank goodness Dr. Day had known me for 17 years prior because the hospital immediately called the Department of Children to report suspected abuse. We re-visited Dr. Day later in the day and received the written report from the hospital. On the bottom of the doctor’s notes I read words I will never forget. “Rule out Osteogenesis Imperfecta”.
The doctor referred to “Osteogenesis Imperfecta” as OI and said at this point it was a waiting game. Nothing could be done for her until we saw how severe she presented. We were to wait and see. An appointment for a pediatric pulmonologist was set up later that day to check Olivia’s lungs to make sure they were not punctured from the broken ribs. Honestly I don’t even remember much about that visit. The doctor was kind but insisted that we just not sit and wait. He gave us a speech about being informed parents. Research and don’t be passive about Olivia’s care. He mentioned that this disease referred to as OI was very rare and that a lot of the leg work would need to be done in finding doctors who were familiar with caring for these patients. Many children did not survive the first few months of birth.
My husband and I were numb and overwhelmed to say the least.
We spent the weekend attending the wake and funeral celebrating my brother Anthony’s life and death. Unfortunately, he had passed away the day after Olivia was born. I handed Olivia over to all of the visiting family. I did not know that I could have been causing more harm than good. We shared the information with no one as we still couldn’t grasp the magnitude of how this would change our lives. After all, Olivia looked like a beautiful healthy and happy baby girl. Cooing at just the right times, snuggling etc. However, in the times she should have been sleeping soundly she moaned and cried. Later we realized it was from the pain she was experiencing.
The next few weeks of my maternity leave, while my husband returned to work, I spent hours scouring the internet for information about OI a.k.a. brittle bone disease. Olivia was not eating well, wasn’t growing like she should and seemed to have a hard time sleeping. She always wanted to be held but after we shared this diagnosis with family and friends, no one wanted to hold her. She was delicate like a snowflake. She was beautiful but breakable.
During my research I found a website for OI. It was for the Osteogenesis Imperfecta Foundation located in Virginia. The site was www.OIF.org. They had material to purchase and download to become familiar with the disease. I became obsessed to find my daughter the help she needed while my husband and I discussed my working again. Financially there was no choice in the matter. I had to return to work or lose everything.
I did not want to leave my child and the doctor’s appointments were endless. We traveled from Shriner’s Hospital in Tampa to University of Miami to find someone to help Livy. Everyone told us genetic testing needed to be performed and the insurance company didn’t want to pay for it. Olivia continued to break bones. While changing a diaper or moving her gently a pop would be heard and the tell tale scream to let us know what had occurred. She was hospitalized at Joe DiMaggio Children’s Hospital where more x-rays were performed and each time another break was discovered.
Livy had experienced multiple rib fractures and a collar bone fracture on Mother’s Day. One of the difficulties of caring for an OI child is while they are not verbal it is sometimes hard to distinguish which bone fractured. Again we were off to the hospital with a hysterical baby. Every time we presented to the Emergency room we were questioned how a fracture could have occurred. Who was caring for the child and again how could she have broken. This time it was a huge red flag because her collar bone was broken and her teenage sister was the one caring for her. Abuse was suspected. You could feel it in the air as we were kept at the hospital for hours.
Fast forward five years, Olivia is a happy little girl who has to experience unhappy times. She has had collar bones fractures, rib fractures, leg and arm fractures. The very act of standing caused a fracture. She attends physical, water and occupational therapy weekly and has a cast or splint pretty regularly. Even with all the pain she is a wonderfully happy child. She is very intelligent, speaking well above her chronological age and giggling like the rest of the five year old population.
Once every other month Olivia spends some time at the hospital receiving an intravenous medication to help decrease bone pain and strengthen her bones. The PAM treatments were not begun until Olivia was almost two years old however, the improvement has been remarkable! Olivia was delayed in walking. She has endured a spica cast for 6 weeks and has had both arms cast at one point but she lets nothing slow her down. She is huggable, silly, talks like she is eight and is so much fun to be around. The first two years were tough but every day gets better and better.
Our family experiences very difficult financial issues. Olivia's medical issues required her mother to give up her full time job. She currently homeschools Olivia, works part time on Fridays for a not-for-profit in the accounting department, teaches online college classes and does direct sales of customizable jewelry to help meet the bills. Unfortunately, the family doesn't qualify for any financial help and things are very tough. But through it all my husband and I agree that we wouldn't change it for the world. Olivia brings joy to EVERYONE she meets. She is outgoing and talkative and is comforting to all children and adults. She faces hard, painful days but is an inspiration to all. In fact, she was just awarded "Hero of the Year" from Kids Wish Network after a child life specialist at the hospital wrote a paper discussing why she is a "Hero" in her eyes.