William (Liam) J.
Condition: Hypoxic Ischemic Encephalopathy
City, State: Beaverton, OR
Club: Aloha High School Sparrow Club Service Hours:
Date Adopted: 3/01/2010
William (Liam)'s Story:(4/1/10) Our lives were forever changed when Liam's first struggle began. Just before midnight on June 8, 2009 Liam's heart rate was lost from the fetal heart monitor for several minutes. It was recovered but for the next 3 hours Liam showed signs of distress leading us to the decision to deliver him via C-section before it was too late. William Patrick Jones was welcomed into the world at 3:11 am on June 9th. Little did we know his fate was decided well before we intervened.
Liam showed abnormal signs immediately. He was jittery and shaking, striking rigid poses, and deviating his eyes. He would not suck, had no gag reflex, no cry, and he was having seizures. His first day of life was full of tests, CT scan, EEG, blood work and an x-ray. After a few hours Liam's body just shut down. He went into a comatose state and would remain in that state for 2 weeks.
Initially we were told that the cause of the seizures was a skull fracture that was seen on the CT Scan, we were told that the seizures and the abnormal behavior would resolve as the fracture healed in a week. We were confused as to how he had been injured but relieved that he would be okay, not until three days later when the doctor sat with us and delivered the devastating news that the CT scan had been misread and an MRI revealed Liam had suffered Hypoxic Ischemic Encephalopathy (severe brain damage caused by oxygen deprivation.)
The damage is to the Thalamus region, which controls cognitive and motor skills, meaning Liam may never walk, talk, or eat by mouth. He may be in diapers for the rest of his life and have severe mental handicaps. This condition is one that will never "get better." The damage to his brain is permanent. Our hearts broke and we mourned the loss of our dreams for Liam's future. We were scared that we didn't have the capability to care for him and we were forced to considered the worse... he may not survive. We prayed for miracles.
We brought Liam home at 3 weeks of age after they surgically inserted a feeding tube into his tummy. At 4 weeks he made his first sound and began crying like a "normal" baby. He was slowly beginning to do what "normal, healthy" babies do, taking the bottle (only VERY small portions), We were amazed. Then one day he just stopped. His coordination wasn't smooth and we feared that it was too dangerous to continue with even the tiniest bit. Our hearts were broken. He took one step forward then two steps back. He is currently fed 99% by G-tube. Although we try oral feedings with Liam to give him the opportunity to taste and practice swallowing, he seems to do well with just a spot of baby food. His Favorite; chicken and brown rice!!!
Liam's first few months of life were full of trials and errors. Different medications with undesirable side effects, medical testing, a few overnights at the Children's Hospital, multiple Doctor's, Specialists and tons of therapy. He currently receives a monthly shot of "magic antibodies" that cost $2500 a dose. All of this, keeps us very busy and worried!
In December we started noticing different little jerks. His arms would fly up along with his legs and his eyes would cross. It only lasted a few seconds and in clusters of 5 to 10. He has severe brain damage, his potential for involuntary movement is high. But they got worse and fast. Liam was having 15 a day then 30 a day. We called the Neurologist immediately and had an EEG then started a new seizure medication that night. Only thing is they continued to get worse, 50-60 a day. Medications take time to work sometimes months. We felt like Liam was running out of time because they continued to multiply and currently he is having upwards of 100 myoclonic jerks in a 24 hr period. He is on 5 different seizure meds with hope that this new one will give him some relief. As Liam's brain is maturing it is changing, in some aspects (seizures) getting worse. You see when one is consumed by seizures, especially a child his age it makes any development practically impossible. Little Liam is 9 1/2 months old and physically he has the ability of a 2-3 month old. His seizures tire him and he doesn't have the strength to lift his head for long periods, roll over, sit up on his own, crawl or grab and hold a toy. We have been heavily involved in therapy but Liam is so sensitive that a position change for Example; rolling him from his back to his side induces a seizure. Not being able to work with him on what most of us take for granted is severely delaying his progress. But we wait and we pray for miracles that one day Liam will crawl, walk and play like most children his age. He is on a hiatus from therapy at the moment and any stimulation until his seizures improve.
However he does love to play. We have a system to help Liam hold and shake his toys for he has not yet the ability to play by himself. He is reliant on us in many ways based on the severity of his disability and we are there for him. He LOVES story time!!! His favorite book is "Hop on Pop" by Dr Seuss among others that are animal related. He loves to bounce!!!! It makes him giggle and laugh. His most favorite is cuddle time, he relaxes when he feels safe and secure in our arms!!! He likes US to stomp down the stairs like dinosaurs and roar!!!! His hearing is good thus he enjoys music, Liams favorite band; The Beach Boys. It lights up our faces to see joy in our little man, he has endured more in 9 months then most do in a lifetime. He has amazing strength.
Little Liam has a long and difficult road ahead, but he will one day rest knowing that with the help of the community coming together, donating time and money, Liam will never have to go without the medical supplies his life depends on. It is a wonderful example of how a selfless act can impact a little boy with severe challenges. One day he will understand the tremendous gift you all have given and feel loved and accepted for his disabilities. There is an incredible feeling of togetherness, a community willing to open their hearts to those less fortunate. We are extremely blessed and grateful.