CP Daughter Inspires Mom’s Passion for Photography

By Sara Sprague

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Being very career focused in my 20′s, I obtained my RN rather young. I went on to spend more than a decade dedicating my life to caring for and healing critically ill children in the Pediatric Intensive Care Unit, all the while dreaming of the day I might have my own child. After marrying my Prince Charming in 2008, it wasn’t long before we were expecting a precious baby girl.

Perfect Pregnancy Ends in a Heartbreaking Birth

In June of 2009, I had succeeded at a very healthy full-term pregnancy. Thirty-two hours after I was admitted to the hospital for labor, I knew something didn’t feel right. With each passing contraction I could feel that I could not advance the fetal head. After pushing for an additional one and a half hours, my caretakers realized that our daughter was not in a position for birth. She presented ear-first instead of crown of head-first. Much more concerning than her position was the discovery that her umbilical cord was completely prolapsed, cutting off her circulation and oxygen supply. I watched helplessly as her heart rate fell from 60 to 30 to 20 to reading nothing at all. I was whisked to the operating room with the OB riding in the bed to hold the fetal head off of the umbilical cord. Just before I was put under general anesthesia, I remember thinking I needed to prep myself for the possibility of waking to the news of a stillborn.

When I woke and was taken off the respirator, I was told that “Lyric,” named for her father’s musicianship, had survived.

When I was well enough to see her for the first time, I was still in a fog, but I noted abnormal newborn posturing right away. After having her evaluated by a Pediatric Neurologist, my fears were confirmed and Lyric was diagnosed with mild cerebral palsy and double left hemiparesis. In her infancy, she was not able to use her left arm/hand much at all and kept it tucked tight to her body.

Exhausting Schedule of Treatments and Therapies

All of Lyric’s developmental milestones were delayed and as she came into her toddler years, she required extremity braces, physical, occupational, and speech therapies five to six days a week.

This schedule grew exhausting fast and I felt like we had little life outside of the intensive therapies and focusing on what Lyric couldn’t do or should be doing at her age.

I decided we needed an OUTLET. An outlet that allowed me time with Lyric, that could perhaps CELEBRATE Lyric, and help me to see some positives instead of living in the perpetual state of what she “could not do.”
 

Channeling My Creative Energy through Photography

I had always dabbled in photography and found great joy in dolling Lyric up, experimenting with lenses, lighting, adding silly props and setting scenes. I took a few photos and submitted customer appreciation photos to the various children’s clothing designers from whom I had purchased. Before I knew it, I was getting requests from more and more designers for photographs.

By the time Lyric was 12 months old, I figured it was time to get some photography education under me and some professional equipment along the way. I took various classes/mentoring, began networking with area photographers, and taught myself Photo Shop – THE MOST UN-USER FRIENDLY program on Earth! As Lyric grew, so did the demand for my photography. By the time she was 18 months old, I launched a Facebook fan page to reach a larger audience. Soon after, I was requested by area mommies to photograph their little sweet peas and as it turns out, I had a bit of a knack for I, a talent I NEVER would have realized if it weren’t for the birth of my special needs darling.

Appreciating the Irony of Life’s Little Surprises

I realize my multitude of blessings now… to be a mother to a child who has come so far in her short life to become what you see today…to be married to the most incredible father and partner I could have chosen in this journey, to be a photographer on a full time basis and an RN only part time, and to be networked with literally hundreds of like-mamas who have taught themselves to sew, build websites, and pursue numerous other entrepreneurial endeavors to help them stay at home and available for their special needs children while still supporting their families.

It’s so very ironic how life unfolds with little surprises along the way. Lyric is now 3 years old and is more inspiring and amazing to me by the day. As her parent, the fear of the uncertain future can be overwhelming but I’ve had gentle hands to guide me along this path and take one day at a time… and a photo to cherish every day.

About the Author

Sara Sprague is a Registered Nurse of 10 years dedicated to Pediatric Intensive Care & Neonatal Intensive Care. After the birth of her own special needs baby, she decided to pursue her passion for photography on a professional level so that she could be more available at home. She now runs SAS Photography, a boutique baby photography company.

Cerebral Palsy Diagnosis

Many parents of children diagnosed with cerebral palsy are given little explanation of the cause, severity or future implications of the disorder. Surprisingly, many children may not receive a cerebral palsy diagnosis until they are school age, even though there may have been circumstances at birth that indicated risk of cerebral palsy. Many pediatricians take a “wait and see” attitude when parents present issues of delayed development.

Most cerebral palsy conditions are caused by lesions on the brain. These lesions may be caused by:

• Injuries that occurred during pregnancy or birth (congenital cerebral palsy)
• Injuries sustained in the months or years following birth (acquired cerebral palsy)

While symptoms range from mild to severe, the condition does not get worse as your child gets older. Depending on the level of severity however, a child may be at risk for complications related to cerebral palsy such as developmental delays, failure to thrive, joint contractures, scoliosis or seizures.

Cerebral Palsy Diagnosis

Spastic Cerebral Palsy

Known as the most common form of cerebral palsy, spastic cerebral palsy causes tightness in the muscles. Patients have stiff and jerky movements and will often have difficulty letting go of something in their hand. Many children with spastic cerebral palsy rely on medications, therapies or surgical interventions to manage their spasticity and prevent secondary complications.

Athetoid Cerebral Palsy

Athetoid cerebral palsy (fluctuating tone) is a neurological disorder resulting in a variety of movement disorders that result in involuntary and uncontrolled movements. A child may be shaky and unsteady and may make frequent, abrupt movements. Due to the mixed muscle tone involved in athetoid cerebral palsy, a child may experience difficulty with fine motor skills and maintaining torso control.

Ataxic Cerebral Palsy

A less common form of cerebral palsy is ataxic cerebral palsy. Ataxic CP disturbs a child’s sense of balance and depth perception, resulting in jerky, uncoordinated movements. A child with ataxic cerebral palsy may exhibit mixed tone and experience challenges with controlled movements.

Healthcare Concerns

Depending on the level of severity, cerebral palsy may result in a variety of healthcare concerns including inadequate oral motor skills and compromised ability to consume adequate fluids and nutrients. Untreated, severe oral motor dysfunction can result in dehydration and failure to thrive. Other healthcare concerns may include childhood osteoporosis, movement disorders, gastro- esophageal reflux disease (GERD), contractures of the extremities, and scoliosis.

Neuromuscular Issues

These affect the nerves that control voluntary muscles. “Neuro” indicates the origin of the disorder is at a neurological (brain) level. Left untreated, neuromuscular issues can severely impact a child’s quality of life and future development.

Seizures

Not all children with cerebral palsy suffer from seizures, just as not all children who experience seizures have cerebral palsy. Seizures result from abnormal and excessive discharges of nerve impulses originating from certain brain cells. Some of this excessive activity reaches the skeletal muscle fibers and triggers the violent contractions typical of many seizures. Seizures differ depending on the portion of the brain involved. Seizures that occur in only one hemisphere or part of the brain are known as “focal seizures.” Seizures that occur in both hemispheres are referred to as “generalized seizures.”

Range of Motion Issues

Range of motion (ROM) is the measurement used to describe the degree of flexion (how far it can bend) and extension (how far it can stretch or extend) in a joint. ROM is usually measured by degrees. Many children, especially those with spastic cerebral palsy, experience limited range of motion. Children with hemiplegia may experience limited range of motion involving the extremities on one side of their body. Children with quadrapalegia may experience range of motion issues with all extremities including the trunk, putting them at risk for spinal scoliosis.

Early Intervention

Receiving a cerebral palsy diagnosis allows parents to move forward and begin to pursue treatment and therapy options for their child. Early intervention is key to providing children with cerebral palsy the highest quality of life possible. For information about managing your child’s cerebral palsy, visit our Cerebral Palsy Treatments and Therapies page.

Advice to Expecting Parents about Assisted Delivery Using Vacuum Extraction

When a mother is unable to deliver a child on her own, assistive equipment may be used to help speed the birthing process. Because the need for vacuum extraction (VE) is always a possibility during childbirth, parents need to be aware of what it entails and what questions to ask of their doctor.

http://www.cpfamilynetwork.org/blogs/advice-to-expecting-parents-about-assisted-delivery-using-vacuum-extraction?utm_campaign=CPFN+Eblast+-+Dec+26.+2012&utm_medium=email&utm_source=newsletter&utm_content=Vacuum-Assisted+Delivery