Tina Calabro is a writer for the Post Gazette. Seventeen years ago, she wrote her first article about her son, Mark. Calabro had a very difficult delivery with Mark. While attempting a vaginal birth after cesarean, or VBAC, Calabro’s uterus ruptured at the site of a previous C-section. When this occurred, baby Mark was cut off from oxygen. Mark had trouble breathing on his own and had to be placed on a breathing machine immediately after birth. Over the next few days, Mark suffered from seizures. An MRI showed damage to the basal ganglia, the part of the brain that controls movement coordination. Calabro was told that multiple disabilities and complex medical problems were a certainty.
After being in the neonatal ICU for a month, Mark finally came home, still very frail. He was later diagnosed with severe cerebral palsy. Because Mark had weak and uncoordinated swallowing, ingesting anything by mouth was not only frustrating for him, but also very dangerous. Within weeks, he needed a feeding tube, which he uses to this day.
During the first few years of Mark’s life, his motor development lagged far behind. But in other ways, he thrived. He was bright and responsive. Any small accomplishment – holding his head up a few seconds longer than the time before – was a celebration for his parents.
Of course, the Calabros knew that Mark would never be able to do much physically. The family wondered how Mark would ever find his place in the world. But through the ups and downs of life, the family could see Mark’s passion for life, as well as the serious impairments that continuously affected him. Mark was very fortunate, however, to have many people in his life to help remove the obstacles to his development as a full human being. Indeed, when Mark arrived at his high-school graduation ceremony, it was touchingly obvious that he had become a well-developed young man. He showed up with a custom wheelchair, and a mind full of knowledge about some of the world’s greatest thinkers and creators: William Shakespeare, Frederick Douglas, Mozart, Michelangelo, Rachel Carson and Charles Darwin. With a gang of friends that Mark calls his brothers, he plans to attend community college.
SUPPORT SYSTEMS FOR A CHILD WITH CEREBRAL PALSY
Raising a child with significant disabilities requires family members to be perpetual students. Hands on medical and therapeutic care is necessary. Far more challenging are the emotions resulting from chronic sacrifice, relationships in need of attention, the sibling whose life also is affected, and simply coming to terms with the medical condition you’re up against. Cerebral palsy means permanent brain damage. It cannot be fixed, but its effects can be mitigated.
Having a child with cerebral palsy means that you have to teach others. To raise a child with a disability is to accept advocacy as a way of life and to teach the child to speak out to the best of his or her ability. Parents of children with disabilities often work together to maintain the gains for which civil rights activists fought in past decades. The terminology of those groundbreaking accomplishments are forceful mantras; “right to education,” “self-determination,” “home and community based support,” and “reasonable accommodations.”
Due to the collective advocacy for best practices and adequate funding, Mark was set up for success. When he first arrived home from the hospital, therapists introduced the family to the team approach that is the hallmark of high-quality disability services.
As Mark entered school, the district encouraged the family to place him in a regular school. They did just that, and Mark was assigned a personal care assistant, and the school helped the family identify the services that would enable Mark to learn alongside his peers. Thanks to experts in the field of augmentative and alternative communication, Mark communicates effectively, even though he cannot speak with his own voice, and completes schoolwork without the functional use of his hands.
Mark’s main source of motor control is his head. He activates a complex, computerized communications device, called a DynaVox, with switches positioned near each temple. Those switches enable him to drive a battery powered chair and use a computer. At age 5, Mark taught himself to read by playing around with letters and sounds on a screen. At 10, he learned to compose single melodies using computer software. At 16, Mark got a drum machine and formed a band with friends.
Mark’s medical needs are complex, and answers do not exist for every condition. His overall health is fragile. He gets sick more often and more seriously than most people. All of this is frightening for Mark and his family, but outstanding resources make the path easier to travel.
Mark also is well supported in his transition into adult life. Since he is legally entitled to special education services through age twenty-one, the school district will hold his diploma until he completes a special program, called a CITY Connections program. Through the program, Mark will take classes at a community college and learn the skills of independent living. Mark will always need a personal aide, but he wants to be as independent as possible. In fact, Mark has a part time job in which he applies his computer skills, and he is involved in other programs that will help him achieve his employment and other goals. Indeed, Mark accomplishes more than most people can imagine, and effort and perseverance are the keys to his success. Mark lives in a complex reality of dependence and independence. He needs help to do many things, but he wants to give as well.
Mark has had a deep connection with many people throughout his journey – aides, nurses, therapists and so many others – and they allow their connection to evolve well beyond their duties and accept profound feelings in return.
Mark’s mother speaks of a conversation she had with Mark in which the phrase “sink or swim” was mentioned. Mark seized the opportunity to drive a point home. “Let me swim,” he wrote on his screen.
TRAUMATIC BIRTH INJURIES THAT CAN CAUSE CEREBRAL PALSY
Mrs. Calabro engaged in a risky procedure, VBAC, and suffered one of the most serious complications associated with pregnancy, a rupture of the uterus. In fact, a uterine rupture is most commonly associated with trial of labor after a C-section.
VBAC indeed carries a number of grave and potentially fatal risks. A uterine rupture can be life threatening for both the mother and baby. A rupture occurs when the stresses of uterine contractions associated with attempted vaginal delivery cause the uterus to tear open. This can cause severe blood loss or hemorrhaging that deprives the baby of oxygen. Also, the tear could cut off the placenta and umbilical cord from the baby, effectively severing the baby’s line to oxygen. In addition, when the tear occurs, the baby can be expelled out of the protective womb and into the mother’s abdomen. In Calabro’s case, a separation of her C-section scar caused the rupture. Baby Mark was so severely deprived of oxygen, he immediately began to suffer seizures at birth.
A VBAC should be undertaken in very low risk cases, with patients carefully chosen and informed consent given, according the American College of Obstetrics and Gynecology. If the vaginal birth is not showing a likelihood of success, or it is becoming prolonged, a C-section must be performed as quickly as possible. Prolonged labor is not good for a baby; it can cause fetal distress. Mainly, though, there is a high risk of rupture during VBAC, and the longer labor progresses, the more likely it is for a rupture to occur. VBAC deliveries must performed in an appropriate setting, with physicians that are very skilled in the procedure, and who know how to appropriately monitor the mother and baby, and quickly deliver the baby by C-section, if necessary. In cases of uterine rupture, a C-section must take place within 10 – 15 minutes or less in order to minimize the damage that oxygen deprivation can cause in the baby.
Baby Mark had such severe oxygen deprivation that his brain became permanently damaged. Cerebral palsy is caused by damage to the motor control centers of the developing brain and can occur during pregnancy, during childbirth or after birth, up to about age three. In many baby’s with cerebral palsy, parts of the brain are injured due to very low levels of oxygen (hypoxia) in the area. Resulting limits in movement and posture cause activity limitation and often are accompanied by disturbances of learning, hearing, seeing, speaking, eating, and thinking, as well as depth perception, and other sight-based perceptual problems. Impairments also are found in communication ability and cognition, and epilepsy/seizure disorders are found in about one-third of cases. There are several different types of cerebral palsy, including spastic, dyskinetic, ataxic, hypotonic, and mixed.
VBAC can be a dangerous procedure, and uterine rupture can have severe, permanent effects on a child due to the severe blood loss it often causes. A discussion regarding whether to attempt a VBAC is a very important one, and physicians must thoroughly inform potential patients of all its risks and benefits, including whether the birthing facility has enough skilled staff to handle all emergencies, including neonatal resuscitation and emergency C-section. Had Mrs. Calabro planned to have a C-section instead of a VBAC, the rupture probably would not have happened, and Mark may be a healthy boy today.