Can you tell us about your family and first learning you were pregnant?
Kamille is our miracle child. Kamille and her brother are nine years apart. The huge gap in their age was not by design. I had several medical procedures to assist with my infertility issues. When I finally stopped trying, I got pregnant naturally. Briefly what were a few highs and lows of your pregnancy and how long did it last? During my pregnancy with Kamille, I never felt the normal movement that I should have after 20 weeks of pregnancy. After several high-level ultrasounds, she was always in the same position and had club feet. Share what you are comfortable with about the NICU experience for you Kamille. Our world changed in an instant when Kamille was delivered by a C-section at 39 ½ weeks. The doctor broke both legs and one of her arms when they pulled her out. She was not breathing, and I just heard the doctor saying; “Get the NICU in here STAT”. As a mother, the first thing we wait to hear is our baby crying. Instead, I heard alarms going off on monitors, doctors and nurses rushing into the room. When I woke up from recovery I immediately asked for my baby. The doctors and my family were in the room with me. The doctors informed me that my daughter will probably not make it through the night. They were hesitant to take me down to the NICU without fully preparing me for what I would see. I just knew that I had to get to my baby. She was beautiful! I finally had my little princess. She was hooked up to so many machines and she had splints on her broken limbs. I stood over the incubator and stroked her hair. The neurologist told me there was probably not any brain activity and they planned to do a scan the next day. I looked at him and said there was nothing wrong with my baby’s brain because she was tracking my voice with her eyes at just 2 hours old. My daughter made it through the night and was diagnosed with Arthrogryposis, it is a very rare condition (1 in 10,000) where the child is born with multiple joint contractures and the muscles are thin, weak, or missing. Doctors continued to paint a very grim picture for Kamille. They told me that she would never breathe on her own, communicate, walk, or leave the hospital alive. One day she stopped breathing six times and, in an effort, to establish her airway one of her arms was re-fractured. After 2 ½ months in the NICU and several surgeries the doctors told me they were sending her home to die. We went home with Kamille on the ventilator, trach, feeding tube and round the clock nursing care. We visited with doctors that specialized in her condition from Wilmington, Delaware to Seattle, Washington. We researched everything we could about her condition. Kamille did not make any sound for the first 6 months of her life. One day I heard a very faint whimper coming from her room. It was the first time I heard any sound coming from my baby. I was overjoyed to finally hear my baby making sounds. It was the beginning of so much more. Kamille has really defied the odds. See the following list of major accomplishments:
My amazing daughter is an A student and a member of the National Honor Society – when doctors said they didn’t think there was any brain activity.
She sang the National Anthem with her school choir at the Knights game.
She is an awesome artist.
She is a fashionista and plans are underway to open her online boutique (Rollin N’ Faith Boutique).
How long has Kamille needed extra therapies? When did you realize she would need them?
Kamille has received therapy each week since she was released from the NICU. It is imperative for her to receive ongoing therapy to improve her range of motion and prevent her medical condition from getting worse. What therapies have really helped her?
Physical, Occupational and Aquatic Therapy
How did you hear about Bee Mighty and what made you apply?
Kamille’s physical therapist told me about Bee Mighty. We needed additional funding to get a Hoyer lift and customized tricycle for Kamille.
What does a typical day with Kamille look like now?
Kamille recently went back to school in-person after completing two years of virtual learning. She is in the 10th grade and extremely busy with her schoolwork. She has therapy or doctor appointments a few days out of the week. Her favorite pastimes include working on content for her YouTube channel or working on her business.
I know your story will really help other families going through the same thing. Do you have any advice for parents currently going through the same experience?
It is important to build your network of doctors, therapists, family/friends, or resources to help you provide the best care for your child.