How The Journey Began
Chase, John, Galea was born at 26 weeks on March 24, 2007 Weight 910 grams St. Joseph’s Hospital, London Ontario. My husband Shawn and I were taken by surprise when we had discovered that I was pregnant with Chase, after being told for a long time that it would not be possible to conceive another child. When we got the news, both Shawn and I were shocked and in disbelief. Although we felt blessed, we were also very worried about our unborn child’s health because I was considered ‘high risk’. Both our other two daughters, Brittney and Paige were premature and I was now 38 years old.I was determined to do everything right to give my baby the best possible chance. I went to the ‘high risk’ clinic at Credit Valley Hospital every two weeks, had blood work done, took my vitamins and basically was very cautious with everything I did. My daughter Paige loaded all of our groceries in and out of the car and helped me with housework and laundry. I felt really well and excited; I could hardly wait to hold our newborn baby. Already blessed with a 20 year old and a 13 year old, I was going to be a Mommy again!
At about 18 weeks my smooth pregnancy had taken a turn for the worse. I was told during a regular check up that my cervix had already started to thin. I was very upset and concerned however the doctor had reassured me that everything was going to be okay yet to continue to be cautious with my daily activities. I had started to relax and feel confident again and spent as much time as I could, resting. My daughter Paige was a very big help; she did the groceries, made dinner, and supported me with chores around the house; we were so proud!
At 24 weeks I had started to bleed. I rushed to the hospital and was told that it was probably just an irritation from the examination I had the day before; I was sent home. Our fears had become a reality, two weeks later, when I began to experience severe back pain and spotting. I rushed to the hospital once again presuming I was going to be told the same thing yet I wanted to be sure. By the time I had arrived, the pain became much stronger. The doctor told me that he did not believe I was in labor but wanted to keep me at the hospital to monitor my condition and time any contractions, should they occur. The pain got worse; I knew now that I was having contractions which were becoming stronger and more frequent.
My husband Shawn arrived at the hospital. All we could do was to pray for the best at the time. The doctor was now sure that I was in labor and had decided to give me a steroid which was supposed to help the baby’s lungs develop very rapidly. He also prescribed medication to possibly prevent the labor from progressing. After a few hours we were told that it was too late and that there was no way of preventing the labor. The doctor decided that it was necessary for me to be flown to London, Ontario because they were much more experienced and efficient with similar premature births. I was told that my husband could not come with me and I had to be taken by helicopter immediately. After many long hours in the London hospital, the doctor as well as my husband and older daughter Brittney, decided that the best thing to do to lessen the risk was to use forceps to help me deliver the baby. The baby’s condition was becoming very dangerous. The delivery was very scary, as well as emotionally and mentally draining. Our little angel, Chase John Galea, was finally born on March 24th, 2007, weighing only 910 grams. Chase’s low birth weight was extremely dangerous. We were told that there were many possibilities that he may have severe complications yet we knew right from birth that he was a fighter.
The following few months after Chase’s birth were spent in the NICU in London. This was an extreme roller-coaster ride for our entire family. Chase was initially sick with an infection when he was born, only to complicate things further. Chase had a wonderful primary nurse named Marie. Her positive disposition, solid support and optimistic outlook helped our family tremendously. I just can’t explain what it feels like not to be able to hold your newborn baby in your arms. Not to be able to feed him naturally, to comfort him when he cried, to bring him home to his own nursery and to just feel like a ‘normal’ Mom The guilt ate me up every minute of the day; I was torn apart with worry and grief for my son. My entire family was under tremendous stress as I was so far away from home and we were all so worried about Chase.
We stayed as strong as we could yet the long weeks and months put a huge strain on all of us. There were days in the NICU when we didn’t know if Chase was going to make it. On April 6th, 2007 we almost lost Chase. His blood gases were not good at all and he was having a lot of poor breathing spells. Chase’s temperature was very low; we were not able to touch him because he ‘de-satted’ every time he was touched. His eyes and cheeks were very swollen and his whole body had turned purple and blue. My family were called to be there at the hospital; we were all very worried about Chase’s condition and prepared that possibly this might be the end for our little boy. We were asked to leave during the nurses’ hangeover shift. When we returned, after such a short period of time, Chase’s condition was much worse. Chase had to be interbated once again; his blood pressure was extremely low and his kidneys were no longer functioning. During this time there was about ten medical staff members working on Chase just to keep him alive; he was no longer moving. The doctors had decided to start a medication called Dopeamean immediately, as well as several other antibiotics. Still Chase had showed no improvement; he seemed to get worse every time he was touched.
I felt so many emotions at the time; angry, terrified and distraught that I might lose my son so soon. I pleaded with God to please just take all his pain away. I wanted to give all Chase’s pain and suffering to me. It was not fair for such an angel to have to go through so much suffering. Chase was induced with steroids to keep his blood pressure stable and keep his kidneys functioning. We stayed overnight, right beside the nursery, to be informed immediately of any change in Chase’s condition.
The following morning we had asked the nurse if Chase was going to make it. She had replied saying, “Chase is a very sick little boy.” Emotionally and mentally I did not think I was able to cope. Although Chase had seemed to slightly improve, we were all petrified. Our little fighter decided that it wasn’t his time and by what we felt was a sheer miracle, he pulled through yet again. In the following days, the doctors had decided to close a faulty valve in his heart which was another complication that Chase had. During the procedure, they severed his left vocal cord which left Chase was unable to cry for several months.
After Chase’s surgery he seemed to improve drastically in some areas. He continued to struggle with several medical issues during the months that followed yet he did seem to be improving a little each day. Some of the issues included several blood transfusions as well as he had to rely on a ventilator and an osalater to help him breath.
Shawn and I also suspected that Chase had seizures in the NICU when he was stressed. We were told by the neurologist that seizures were very hard to detect in babies because they could be so mild in symptoms yet we knew, deep down, that he was having them and we were terrified that they were damaging my baby’s health even more. In total, Chase stayed in the hospital for 101 days; we counted every hour of every day.
The day had finally come when the doctors told us we could bring Chase home. We were all so afraid, yet so excited to finally bring our little boy home where he belonged. Chase was on many different medications and had several conditions however we were all thrilled to finally welcome him into our family home. With so much gratitude we would like to thank God, our family and all our friends for all their love and support. We believe that it was their support along with Chase’s determination that allowed him to survive the first part of his very long journey and to allow for this day to actually happen. Chase was about to begin his new life, outside of the hospital which was all that he had ever known.
The Journey Continues
Since Chase’s arrival home he has been diagnosed with ‘Quad Cerebral Palsy’ as well as moderate to severe hearing loss – Auditory neuropathy, in which he is aided with hearing aids. Chase also has seizures which used to occur monthly. In recent weeks they have become much more frequent, seemingly epileptic. Chase was officially diagnosed with CP when he was 18 months old, although Shawn and I knew prior to the diagnosis. We took Chase to a specialized Ability Camp for people suffering with CP, despite being told that what we were noticing was simply because Chase was premature, therefore delayed. It felt as though nobody was being honest with us, or at least they were afraid to tell us the truth. We spent hours researching the internet and books on CP, grasping at any information we could find to help Chase immediately; we couldn’t wait, Chase needed help now!
Despite Chase’s disabilities and daily struggles he is an unbelievable inspirational little boy. Chase is not only an incredibly happy child but also a keen and enthusiastic two year old little boy, eager to experience and master his environment. His determination is often met with success, as Chase persists with even the most challenging activities. Chase has attended a special Ability Camp twice; he has also participated in Conductive Ed through the March of Dimes. Given his limitations, he has progressed very well and continues to persevere with any challenge he is faced with. Chase is now walking with a walker and sitting on a stool. He is a very social, happy little guy whose determined and positive attitude supports his success.
Having a child with a disability is very surreal. There are so many mixed feelings including fear, guilt and an often a gut-wrenching feeling about Chase’s life and what the future holds. He has to do so much every day to meet what most would consider minute milestone. I will never take anything for granted again. It is very difficult to accept that Chase will struggle every day to walk, hear, talk and communicate with his loved ones and society at large. Every time Chase struggles to crawl, or tries to pull himself up to stand,
I feel so sad and angry. My heart aches because I know that this is going to be his life. Although Shawn and I will continue to fight for Chase and give him every opportunity to meet all goals, we know that he will have to fight every inch of the way. Shawn and I believe in our hearts that Chase will walk and play ball one day!
Chase is a very determined little boy and with the proper tools and funding he will meet his goals. The Government provides very limited assistance or funding to help children like Chase therefore it can become draining, financially to provide Chase with the best resources. Chase’s therapy has recently been cut back from once a week for one hour, to once every other week for one hour. This is simply not enough to help chase to progress as he should. Chase’s OT was once every other week for 45 minutes but was then reduced to once a month.
Conductive Education through the March of Dimes is 2 hours twice a week at a cost of $46.20 per hour. The CP Ability Camp cost is $4,565.00 for 5 hours, 5 days a week for 5 weeks. There are many more costs associated with Chase’s condition, such as: Chase’s stander which is $1600.00, AFO’S $2746.00 and $2059.50 for hearing aids. His bath chair which is $2600.00, new molds for his hearing aids which are $120.00, Botox, $840.00 every 6 months, Peidro shoes, $200.00, his walker, $300.00 as well as gym equipment, such as wooden climbers, parallel bars, grid walker, etc. This is just the beginning of Chase’s expenses.
As Chase gets older the equipment and resources needed to give Chase the opportunity to improve and develop to the best of his ability will only become more financially, emotionally, mentally and physically demanding.
My family and I are so very proud of Chase and his accomplishments. We are confident that with continual support, coupled with his intense determination, Chase will be the best he can be. We will never stop searching for any medical breakthroughs or opportunities to support Chase as he continues his journey.
By creating this website for Chase, we are creating an awareness of the struggles those families with children that have special needs have to endure every day. We are showing you that miracles do happen and we are reaching out to you by asking that you share in and join us as Chase’s journey continues.