Emma and Hope
Cerebral Palsy & Blindness
What is Cerebral Palsy?
Cerebral Palsy (also referred to as CP) is a range of impairments that result from a brain injury. The most common impairments affect walking and speech. In severe cases a person may be unable to swallow or speak and may require a feeding tube or a ventilator to breathe. Vision & hearing impairments are common. In extremely severe cases there may be intellectual impairments.
Emma incurred brain damage during birth due to lack of oxygen after her mother's uterus ruptured and there were delays getting medical attention. She is legally blind, quadriplegic, unable to speak, unable to sit, crawl, or even suck her own thumb, is dependent on a feeding tube and has severe cognitive impairments. 11 months later the same thing happened to Hope except she was also significantly preterm and, a week later, hemorrhaged on both sides of her brain. The doctor told me she'd be just like Emma.
One nurse told me, in 30 years of working with special needs children, she'd never seen anyone survive a brain injury as bad as Emma's. But check out these pictures. Hope has beaten the odds and overcome most of her brain injury and Emma is happy in spite of her disabilities. Some say Emma and Hope are miracles. The real miracle, however, is how such a tragedy could bring so much blessing and joy to our lives.
Hope, clinging to life in the NICU.
My hope is that families starting this process with a disabled child will find hope, comfort, and help in this web site and that those outside the disability community will be able to share the joy and blessing we have experienced through having a disabled child.
As you begin your journey, a good place to start experiencing the joy and blessing is with this video about a man and his son with cerebral palsy who compete in marathons and triathalons. The video is truly inspiring. If you didn't watch the video about Emma and Hope on our home page be sure to go back and watch it too.
How and When is Cerebral Plasy Diagnosed?
Walking and speech are not present at birth so CP is often not diagnosed until a child is a couple years old when he/she starts missing development milestones. What is often diagnosed at birth is the brain injury or birth defect. In our case, both Emma and Hope were diagnosed at birth with HIE (Hypoxic Ischemic Encephalopathy), the technical name for brain damage due to lack of oxygen, but only Emma was diagnosed with CP because Hope began overcoming much of her brain injury prior to age 3.
Causes of Cerebral Palsy
Other causes of cerebral palsy include any brain trauma, such as falling off a bicycle, traffic accidents, near drownings, birth defects, medical mistakes, stroke during pregnancy, high fevers during infancy, physical abuse, lack of oxygen due to choking on food, and drug abuse. In some cases it's caused by a combination of things such as in Emma's case. It was the combination of her mother's uterus rupturing at home and medical mistakes that resulted in her being so severely disabled.
A ruptured uterus is a catastrophic but rare event, associated with death and injury for both mother and baby.
It happened to us twice.
What Cerebral Palsy is Not
1. Cerebral palsy is not a death sentence. People with very severe cerebral palsy may have shortened life expectancies but most live normal life spans.
2. Cerebral palsy is not contagious. It's an injury. You can't catch it from someone else and, if you have it, you can't give it to anybody else.
3. It doesn't mean a person cannot have a "normal" life. Many people with cerebral palsy live independently, raise families, have jobs, and do the same things other people do. Especially with new technologies, there are ways people can overcome many of the obstacles cerebral palsy presents.
4. Just because a person has difficulty with speech doesn't mean they're stupid. Most people with cerebral palsy have normal intelligence.
See more about Team Hoyt
Types of Cerebral Palsy
There are many types of cerebral palsy. It can affect just the legs, all four limbs, or an arm and a leg on one side of the body. It can cause high muscle tone, noted by spastic jerking movements, or it can cause low muscle tone, noted by limbs which are limp. It can even be high and low muscle tone. The affect may be limited, allowing the person to walk, or it may render the person quadriplegic like Emma. Note: Quadriplegic doesn't mean paralyzed. It simply means the person does not have functional use of the four limbs. In Emma's case she can kick but most of the kicking is involuntary.
Severity of Cerebral Palsy
The severity of cerebral palsy varies depending on what areas of the brain are injured and how severe the damage is. In mild cases the person may just walk "funny". In severe cases the person may be quadriplegic, blind, deaf, and dependent on a ventilator to breath. The damage may not be confined to the brain. In Emma's case there was also damage to the optic nerve. In cases of oxygen deprivation, every cell and organ is affected. The brain is just less able to recover so it is usually the most severely damaged.
Does Cerebral Palsy get Better or Worse over Time?
Because the brain does not heal, cerebral palsy does not get better or worse over time. However, over time it does tends to produce secondary problems. The constant tension of spastic muscles tends to pull joints and bones out of place. Orthopedic surgeries are often required to try to correct these problems.
Emma can't speak but that doesn't stop her
from telling her sister off.
