My Medical Story: Bailey C.

Bailey is your typical 13 year old girl, the only thing different about her is that she’s just a bit shorter. Bailey is a little person with Spondyloepiphyseal Dysplasia Congenita (or SED), which is a rare disorder of bone growth that results in dwarfism. People with Spondyloepiphyseal Dysplasia are short-statured from birth, with a very short trunk and neck and shortened limbs. Their hands and feet, however, are usually average-sized. This type of dwarfism is characterized by a average spinal column length relative to the femur bone.  Curvature of the spine (kyphoscoliosis and lordosis) progresses during childhood.  Changes in the spinal bones (vertebrae) in the neck may also increase the risk of spinal cord damage.  Decreased joint mobility and arthritis often develop early in life. Some infants are born with an opening in the roof of the mouth, which is called a cleft palate. Severe nearsightedness (high myopia) is sometimes present, as are other eye problems that can affect vision such as detached retinas. About one-quarter of people with this condition have mild to moderate hearing loss.  When it comes to Bailey she has mild features of SED but has been through a cleft palate repair (of the soft palate), wears glasses, has hearing aids and had traction with spinal surgery.  She is the strongest person I know.

Bailey has taken annual journeys to Grand Rapids, Michigan to be seen by many specialists from the time she was a baby. One condition that the doctors prepared us for was scoliosis. Little did we know how bad it would actually be for her.  For years, Bailey had been going to see an Orthopedist, and although they kept a very close eye on her (every six months to be exact), Bailey's scoliosis curvature was over 108 degrees. She also had kyphosis; this resulted in a hump appearance to her upper back and back pain. If she had continued to go without correction, her spine would continue to curve and cause more bone deterioration, stress on internal organs, possibly severing of the spinal cord, and shortening of her life span.

So, on July 15, 2013, Bailey, at 13 years old, began another journey. She underwent surgery at Helen DeVos Children's Hospital in Grand Rapids, Michigan (two hours away from home) to have a halo put in place. The halo gets its name from the metal ring that surrounds the head, which looks like an angel halo.  The ring is attached to the skull with pins or screws that hold it in place. It then was hooked onto 10, 20, 30 and then eventually 40 pound weights at all times. With the halo in place, she started her three month Halo Traction process to reduce the degree of curvature in the spine and align her spine in preparation for a second surgery. This process lasted three months. Bailey was very lucky, she followed all the doctors’ rules and didn’t need to stay any longer (like some other kids needed to).

Following the placement of the halo, Bailey had remained in traction at all times. Bailey’s mobility had been retained through the use of a wheelchair and a walker during her three month stay in the hospital. Patients in halo traction require a caregiver at all times. I, Melissa (Bailey’s mom), was by her side every step of the way and helped her with all of her daily personal care and mobility needs. I took an unpaid family medical leave of absence from work in order to be away from home and stay with Bailey while she was in the hospital. We were blessed with family and friends that had a fundraiser for us during that time of lost wages.

Once the medical team was satisfied with the straightness of her spine, they scheduled her for her second surgery. With the second surgery, Bailey's doctors removed a section of her spine that had dissolved itself due to the severe curvature of her spine. They put in what is called a cage. The cage holds her new cadaver bones that stabilize her spine. In order to get around her spine they needed to remove portions of five ribs. Next, they placed two rods straight down her spine and two screws in each vertebra for more stability.  After the surgery, she stayed on a ventilator for five days because she had received a lot of fluid to control her blood pressure. Although it was frightening to see her this way, we knew it was the best thing for her. She was able to sleep through what the doctors say would have been her worst days of pain. Afterward, she was placed in a wheelchair, but slowly graduated to a walker with physical therapy to regain strength and mobility. 

Bailey finally returned back to school with a special back brace.  She was so happy to return to school after her five and a half month ordeal.  On January 17th we went back to Helen DeVos for a follow up visit, where she received another MRI and was told she no longer needed a back brace and that she is healing well.  

Bailey is a brave, beautiful, strong young lady who has faced more than any of us will ever have to.  She would tell you that although she has and always will face certain physical challenges, she wouldn’t change a thing about herself because this is how God made her.  She truly is someone very special!