Five and a half weeks before his due date, Zachary became extremely stressed in the womb and ceased to move. Renee had complications (high blood pressure, onset of preclampsia) toward the 33rd - 34th week of gestation. On March 8, 2007, at the 35th week of gestation, Zachary was born by emergency c-section weighing only 3 lbs 7oz – extremely small for his gestational age. He was near heart failure and could have died if he went one more day in the womb. Doctors said his measurements were that of an 8-week early baby, not 5-weeks, due to intrauterine growth retardation.
Unable to breathe on his own, doctors rushed him to the Neo-Natal-Intensive-Care-Unit and put him on a ventilator. It took an hour from birth until he was properly intubated with oxygen with both lungs opening correctly. That night, he was transferred to the Neo Natal Intensive Care Unit at the Denver Children’s Hospital. For the next 30 days, Zachary stayed in an incubator and slowly began growing stronger and healthier every day. During that time, he was on a ventilator, a CPAP machine and nasal oxygen tubes. Renee and I spent every moment we had with him at the hospital.
It was such a scary experience watching our son covered with tubes, IVs, wires and bandages all over his body. The love, worry, care, stress and concern we felt during those days was so overwhelming.
After those 30 days, the doctors felt Zachary was healthy and stable enough to come home with us. He weighed 4 lbs. 5 oz. Doctors said he would be delayed as any premature baby would, but remarked he would be normal and healthy overall. The doctors had no concerns, but we were so afraid – there would be no monitors, no nurses, no doctors at home with us. Would he be OK? The first couple weeks were quite sleepless – not because of Zachary waking up, but because we would get up constantly throughout the night to check on him. It was mixed emotions – as new parents we were elated to have our son finally home, but it was still scary at the same time.
In the next several months, Zach grew and did well overall. He seemed to sleep well and eat well, but Renee and I kept feeling that something was wrong. His posturing, movements and behavior just didn’t seem right – poor head control after three months of age, arching of the back, stiff muscles, pointing his toes downward all the time, severe crossed eyes, clenched fisting of hands, scissoring of legs. Because he was a preemie, our pediatrician pushed aside our concerns and told us Zach would “grow out of it.”
These symptoms built up to a parents’ worst nightmare– at nearly seven-months-old, Zachary began having spasm-seizures that began on Oct. 3, 2007. They were jackknife convulsions that forced his hands up, his eyes to roll back, and his torso to collapse forward.
Zachary immediately saw a neurologist and received an EEG, which revealed constant seizure activity in his brain. The diagnosis was called West Syndrome, a form of infant epilepsy. Zachary would have the seizures about 3-5 times a day. Each session would have him doing the jackknife convulsion every 3-10 seconds for a period of five minutes.
Zachary was put on Vigabatrin/Sabril for a period of three weeks. The prescription only lessened the seizures; it did not stop them. So, under the neurologist’s recommendation, we took an aggressive approach and underwent ACTH injections (a growth hormone with some risky side effects, but known to be a possible help with West Syndrome). The injections took place once a day, and Zachary was hospitalized for a week. After the sixth injection, Zachary never had another seizure. He continued the ACTH injections, weaning off them after eight weeks. Two follow up EEGs confirmed all seizure activity has ceased and Zachary has been seizure free since November 6, 2007.
The neurologist informed us there is always a bigger underlying cause to the seizures and ordered an MRI. That brain scan revealed severe brain damage. He has Periventricular Leukomalacia (cysts on the brain) and major damage to the white matter of his brain. They diagnosed him with Spastic Quadriplegia Cerebral Palsy. We learned that Cerebral Palsy was a blanket term for a brain injury occurring before, during or just after birth. Getting the diagnosis from the neurologist was like getting hit by a semi-truck for me. I was devastated and scared. Being ignorant to it all, I remember asking this question to the neurologist, “Is this something that he can grow out of?” His response of course was, “No, brain injuries are life long.”
We don’t know why and don’t know how, but we the only thing we could do was trust in the Lord’s purpose for Zachary.
The brain damage was the cause of the seizures and the beginning of our ‘special needs’ journey. Because of the damage, Zachary has a considerable amount of disruption between his cortex and nervous system communications, which affect the control of all four limbs. Zachary has hypertonic tone, but his tone is also dynamic, meaning he has the ability to relax and have limited control over his muscles. He has difficulty controlling his arms, hands, and legs. His feet point downward, his body is stiff and he is globally delayed in all areas of development. Currently, at nearly three-years-old, Zachary cannot sit up on his own, walk, talk beyond “mama”, “dada”, “nana.” Zachary can roll over and army-crawl to get around on the floor
His eyes were severely crossed and he was diagnosed as extremely being far-sighted. He has received two surgeries to correct his crossing and has shown significant improvement, having his prescription cut in half.
He receives botox and phenol treatments three times a year to reduce his spasticity. He also has received in the past or is currently receiving numerous therapies to help him with range of motion and general development - physical therapy, occupational therapy, music therapy, speech-communication therapy, early intervention therapy, Conductive Education, and Hyperbaric Oxygen Therapy.
Through it all, we learned a new found appreciation for all of Zachary’s milestones, achievements and laughter, things too often taken for granted. We count ourselves blessed to have Zachary in our care. He has taught us so much about life, patience, and love. Zachary has sparked a new passion in our lives and our entire family hopes to help others in any way possible along this journey we all share.