Breann was born in 1997. She was approximately five weeks premature and weighed 2420 g length 49 cm, head Her Apgar scores were 8. She was noted to cry spontaneously but her color remained dusky and she was given blow-by oxygen followed by mask CPAP because of diminished breath sounds. Following these interventions she improved in color. Because of her prematurity, ongoing oxygen requirement, and apnea she was taken to the newborn intensive care unit and placed in an oxygen-concentrating hood. Her initial exam showed the spine as being straight and no defects in the sacral area. But it was noted that she had a right hip click. No evidence of scoliosis was diagnosed until she was three months old.
She started out as a fighter and continues to do so. Her mother was her strongest advocate from the time she gave birth to Breann until she died in an accident on October 28, 2001. As Breann’s grandmother, I have vowed to continue her mother’s battle to help Breann through this ordeal of infantile scoliosis along with the support of our family.
Other problems soon arose for Breann. On January 20, 1997, it was noted that Breann had a small 1 cm hemangioma on her left upper arm. On March 3, Breann’s hemangioma was larger and she was diagnosed with probable fifth’s disease with resultant eczema. The hemangioma was surgically removed at three months. Breann was also x-rayed because of a persistent cough. Levoscoliosis of the thoracic and lumbar spine were found. Her curve was at 40 degrees by this time.
In May, at the age of four months, Breann showed evidence of head malformations. One side of her head appeared to be growing more than the other and one ear was larger. After a local doctor in Grand Junction examined her and could not identify the cause of the abnormalities (he at first suspected down’s or another syndrome), Joyce took Breann to Denver. She was examined at Columbia Presbyterian/St. Luke Medical Center and was found to have no syndromes. However, her curvature had increased to 45 degrees. Her neck lacked about 25 degrees of full rotation at four months and stretching exercises were prescribed for her. Breann’s mother worked diligently with the stretches several times a day and within a few months Breann’s range of motion had improved.
In August, at age of seven months her curvature had increased to 53 degrees. She was not yet able to sit up unassisted.
In November, at age ten months her curve was from T7 to L2 at 55 degrees. Her rib symmetry was also more apparent now. No cast or brace was yet recommended by the doctors. Breann’s mother was insistent that something be done. She continued to stay in contact with the doctor in Denver, but didn’t get immediate results. She also was spending time researching this condition, searching for methods to help Breann.
Finally after pressing the issue in February at the age of 13 months Breann entered the hospital in Denver and was placed in a Risser cast. Under anesthesia, pressure was applied to her spine and x-rays showed the curvature was pushed down to 32 degrees with the applied cast.
In March at age 14 months her second cast was applied. Her curve had gone back up to 45 degrees and with the cast was pushed back down to 30 degrees. Every time a new cast was applied, Breann had to under go anesthesia.
In April, (15 months) Breann was fitted in a TLSO brace in place of a cast. Joyce was exited about this because Breann could now have a bath! The brace was designed to come off for only a short period of time a day (about one hour). However, this brace did not work well. The Velcro straps wouldn’t hold and Breann had a hard time tolerating it.
She was place in yet another cast, which brought her curve back down to 30 degrees. In July, because of growth, her cast of only one month was removed and she was placed in yet another cast. Two months later, she once again had outgrown her cast and a new one was applied at Presbyterian/St. Luke’s in Denver. At this time, her curve was at 45 degrees in a cast and it was pushed back down to the low 30’s in the new cast. In October, only four weeks later, she was taken to Denver for another cast change because of growth. Her x-ray showed her curve at 48 degrees when she entered and it was pushed down to 28 degrees with the new cast. The doctors began to give Breann a week off between casts because of some rash and skin sores.
In November 1998, Breann was taken to Denver to have another Risser cast applied. After being out of a cast for only one week, her curve was now at 67 degrees, the highest it has ever been. This continued again in January 1999 (going in her curve was at 48 and after the new cast was applied it was down to 32 degrees.)
The casting helped maintain the curve and keep it from escalating. Her curve remained between 55 and 65 degrees which was a very large curve for such a small child.
Joyce continued to take Breann to Denver to have Risser casts applied and repaired frequently, throughout the year 2000.
In the summer of 2000, Breann’s mother and I flew to Shriners Hospital in Salt Lake City, Utah, so see the French doctor, Dr. Dubousset. We were hoping that a date for surgery could be set. However, after meeting with him and with Dr. D’Astous, we were told that Breann would have to wait for any surgery. She needed time for her lungs to mature and for her to grow as well. The recommendation was for Breann to be in the hospital for a few months, with what at first seemed to be a barbaric procedure. Joyce and I were stunned at the slides shown to us by the French doctor. A halo with eight screws was to be attached to Breann’s head with weights being added at intervals, to stretch her spine and lessen the curve. She was also to be placed in a turn buckle cast. We knew that this alternative was necessary and we trusted Dr. D’Astous’ recommendation as well. So, on October 2, 2000, at the age of 3 ½, Breann was admitted to Shriners Hospital where she remained until mid-January, 2001. She spent all the holidays there (Halloween, Thanksgiving, Christmas, New Year’s and her birthday!). Her mother remained by her bedside all this time, sacrificing all she had to help her baby. Joyce had to leave her other two children at home with family, and only took short breaks to come home to visit them when either myself or her mother could come and be with Breann. Joyce devoted her life to Breann.
When Breann left the hospital she was fitted for a brace with neck support that was designed in France and has maintained a curve around 45 degrees. It was a wise decision to have Breann be a part of this procedure, and we are hoping it is buying her the time she needs. We are very grateful for the care we continue to receive from Shriners Hospital and Dr. D’Astous.
Breann has a daily routine of treatments and exercises she follows that is a part of her progress. She does daily breathing exercises with a Bi-pap machine four times a day for 15-20 minutes, uses an inversion table 2-3 times a day, temporal mandibular disorder preventive exercises several times a day, swim therapy, cranial sacral therapy, massage, warm water treatments, etc. We are determined to strengthen and maintain her health. She is an incredible child.
October 2003 Update
Breann has been in her current brace for 2 ½ years. In July, 2003, a visit to Shriner’s Hospital in Salt Lake City showed that her curve was approximately at a 57 degree curve. She is maintaining her curvature and it has not gotten worse since she was fitted with this brace. She continues to grow at a normal rate, and now weighs 50 pounds and is 4 foot ½ inches tall. She is now six years old, and will turn 7 in January 2004.
Part of Breann’s success is due to her continued therapy and exercises that we are consistent in maintaining. Breann has swim therapy every week at a local hospital to strengthen her muscles, increase lung capacity and improve flexibility.
Breann was staffed with an IEP at her elementary school where she is a first grader. Part of the IEP includes a teacher working with her daily, assisting her in the classroom and in stretching exercises. For about 30 minutes a day, the teacher has Breann hang and stretch from a bar to stretch her back, practice yoga stretches, and continues with neck and jaw exercise. This routine has increased Breann’s mobility and flexibility, as well has her thoracic rotation.
Along with the daily stretches and exercises, Breann uses a bi-pap breathing machine four times a day for about 20 minutes at each session. Her lung capacity and endurance continue to increase. She is an active child that enjoys and participates in most physical activities appropriate for her age. Even though she wears her brace for 23 out of a 24 hour day, this does not hinder her from riding a bike, running, and playing.
Breann has asthma and allergies that we continue to treat her for. She is highly allergic to smoke, cat dander, and some plants, as well as perfumes. She often gets respiratory illnesses accompanied by high fevers due to her weakened immune system. When she is exposed to any of the above allergens, it often results in a severe cough and allergic reaction that keeps her ill for days. She uses inhalers and a nebulizer often to overcome these reactions. Our hope is that she will outgrow these allergies.
Since Breann is growing at a normal rate, Dr. D’Astous expects she will need to be fitted for a new brace within the next few months. Our hope is that she will continue to be successful with a brace so that surgery can be prolonged until she is older.