Cassie lives in Bethune, Saskatchewan, Canada. Cassie was born April 30, 1999 with a rare syndrome called Moebius syndrome. Moebius syndrome is about 1 out of every 150,000 children and only occurs every 10 to 12 years. Moebius affects your cranial nerves – you have 12 cranial nerves. The two main nerves it affects are the sixth (optic) and seventh (facial expressions). In Cassie’s situation it has affected the 9th and 10th which are your swallowing nerves. The swallowing has caused so many problems. You may also have anomalies on your hands and feet which Cassie has. She was born with severe club feet, and missing digits. Cassie spent the first year and half of her life at RGH. During that year she had five surgeries which include the trache, g-tube (feeding tube), fundoplication (so you don’t reflux up), soft mucous cleft palate and both hands. She later had both feet operated on. During Cassies first year and half of her life she had pneumonia numerous times and lungs collapsing often as she was aspirating on her own saliva. A decision was made and she became night time ventilated. After this her whole life changed, she did not have pneumonia as much, the ventilator (peep) expanded the lungs each night which stopped them from collapsing. Up until she was approximately four years of age she was in a wheelchair and on continuous oxygen.
During this time we had many experiences with doctors, nurses, respiratory therapists and surgeons. There were many ups & downs and as parents we had to get use to all the shift changes and learn to trust many people with our child. Cassie’s sister Nikki was 7 and her brother Alex was 4 when she was born. This was also a very difficult time for them as they were shipped here and there.
I was the farthest thing from medical material that you ever laid your eyes on as I worked for an insurance company for 16 years. However, I learnt a lot fast and now can change traches, g-tubes, suction and operate a ventilator.
We also had many ordeals arranging home-care in our home. When Cassie was little she was suctioned every 5 to 10 minutes-there was no way I would be able to handle all of her needs without help. Presently, I have help 6 nights a week.
The majority of our stay was in Pediatrics on 4F, MPICU and Neo Natal. These people were not only our Nurses, Doctors, and Respiratory Therapists, they became our friends. They took very good care of my daughter and made our stay as comfortable as possible for our whole family. They taught me how to become a Nurse and Respiratory Therapist. They even had a farewell party for us when Cassie was finally able to come home.
My little redhead is amazing, some of the healthcare professionals call her the “miracle child”. RGH – neonatal, MPICU and Pedicatrics were a very big part of Cassie becoming that miracle child. Nobody wants to see a sick child or watch chronically ill children but these people do it everyday.
We still have struggles but not near the hospital stays we used to have. Cassie is on valproic acid as she does have the occasional seizure. She has nebs (ventolin, pulmicort and tobramycin) daily. She has five tube feeds a day of Peptamen Jr. She used to be on a medication (allertec) for Cataplexy (which is a form of narcolepsy), however she has not had a cataplexy episode for more than two years so the medication has been discontinued. A cataplexy episode consists of somebody falling asleep or looking like they are paralyzed with they laugh or cry. It happens when they become overwhelmed with emotion. Cassie can have bloodwork done now and not even look up from her ipad. I have seen her kick the medical cart where the iv needles are when we have left the hospital! As she cannot speak because of the trache she communicates with a cellphone and her ipad. She has a wonderful sense of humor and makes us laugh on a regular basis.
Cassie is fourteen now and attends Lumsden High School and loves it. She loves music, plays the bells and knows a lot about legends such as Bob Dylan, Johnny Cash, etc. Last year she was lucky enough to be chosen out of the crowd and be on stage with Johnny Reid, it was so exciting.
We have wonderful family, friends, and community support which has made our lives much easier, we consider ourselves so lucky! Nikki, Alex and her Dad love her unconditionally as well as her extended family Dan, Jacob, Sarah, Curtis and Zack!
This little girl has taught me to be humble, have patience, live each day to the fullest, don’t sweat the small stuff. She is my absolute hero and has brought endless joy to our lives and I will be forever grateful to be called her Mom!
CASSANDRA (MY SWEET LITTLE ANGEL)
My husband and I had our third child on April 30, 1999, a baby girl who was brought into the world by an emergency c-section.
Our daughter Cassandra was whisked away and intubated immediately. My husband (Bill) saw her for a few seconds and I was unable to see her until three hours later. We were then told Cassandra was born with a collapsed lung, club feet, one webbed hand, one hand with smaller digits, her eyes weren't closing and they had to give her platelets ( they weren't sure if she was producing them) and she had a lot of oral secretions. She also had a soft mucous cleft palate that was determined later.
All of this came as an extreme shock as two ultrasounds had shown everything was fine. This night was spent praying for our daughter to stay alive. As time went on and every test was done on Cassandra, she was diagnosed on May 20, 1999 with Moebius Syndrome. I remember them passing us a sheet which indicated "Life Without a Smile, is Still Worth Living". As I read on everything fell into place and made so much sense. The not knowing what your child has is so much worse.
Cassandra has been through more than what most adults go through in their lifetime. Her first surgery was on June 17, 1999 and she had a g-tube put in so she could be fed without a nasal tube down which she disliked so much. Cassandra cannot swallow which required her to have a tracheostomy which was done on July 21, 1999. Her feeds began refluxing up which is a huge problem because she can aspirate on them so she had fundoplication done on October 8, 1999.
My husband and myself soon became regular little nurses and learned as much as we could. At the end of November Cassandra was able to come home on weekends and my husband and I took shifts staying up. Her big sister Nikki (8) and brother Alex (5) were so happy to have her home. Cassandra was sent back to MPICU on December 26, 1999 because she had pneumonia. She was very sick but pulled through just like a trooper. Cassandra then had surgery on January 26, 2000 on her cleft palate.
The most exciting day came for us when all homecare finally was in place and we were able to bring our daughter home on February 14, 2000. The best Valentine's present ever. It was just a complete joy to be home and all be together as a family. Our stay was short-lived as Cassandra was readmitted on March 3, 2000 with pneumonia. She was ventilated again and we came home for another two weeks and then went back for hand surgery on March 30, 2000. She developed pneumonia again and we came home on April 9, 2000. She was able to have her first birthday at home and was readmitted on May 2, 2000.
At present we are still in the hospital with pneumonia. Cassandra is approximately 22 pounds and 29 inches long with beautiful blue eyes and strawberry blond hair with sweet little curls. She can sit up now for short periods and is very very active. She kicks those legs and bounces her butt like she's taking off somewhere. She is suctioned very often (approximately 50 or more catheters a day). She is fed five times a day whether she wants to eat or not (210 ml) of Carnation Good Start. She is on rantidine, iron and tobramycin by aersol mask.
You know when she is happy and most definitely when she's mad. She has the hospital staff, her siblings and parents quite well-trained. If I leave the room those little feet are thump, thump, thump until I'm back. She's our little queenie. Our life has been very hectic this past year but we have been truly blessed with a remarkable little girl who has been just such a happy and content baby. She has taught us more about life then I've learned in my 34 years of living. Her siblings have also had many adjustments but show nothing but love to their sister. We have made many friends at the hospital who have all become Cassie's Aunts and Uncles and have made our stay's so pleasant.
One thing I would like to mention that Cassie has had is an immunization against RSV which is called synagis. It was a total of five immunizations and she has not had RSV. If anybody would like to email please feel free, I will try and help.
Our email address is firstname.lastname@example.org
God Bless all of you and your children.