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Carey Ann’s Story
“Carey Ann was the perfect sister, she never borrowed my clothes, she never took my boyfriends, always willing to listen to my troubles and above all never told my secrets”.
Carey Ann Neufeld Donaldson, Trisomy 18, Sherwood Park, Alberta, Canada, 9/27/1983 – /18/2012
Dear families of SOFT.
Some time has passed since our loss and your loss of Carrey Ann. As we type this, our pain is still raw and our tears never seem to stop. So how can an individual who was not our natural child have such an effect? We look for answers in all places, family, friends , experts , but most of all in memories. Please have patience with us as we try to cover some of those precious memories in a tribute to a very special young lady.
First the medical memories and concerns.
Carey Ann entered our lives when we were asked to take in a highly agitated child of three and a half years, who by then had been given up by her birth parents. She had been institutionalised for those years and by the time we met her had had a history of medical crises.
At birth she was grossly underweight for a term baby and found to have congenital heart disease and intrauterine growth retardation common with Trisomy 18. She was transferred from the University hospital in Edmonton Alberta to a long term care institution at the age of 3 months. During this period Carey had surgery for bowel obstruction caused by Meckel’s diverticulum. She also suffered numerous bouts of chest and urinary tract infections.
Diet was a tremendous problem due to feeding difficulties. She was being gavarged 5 times daily and vomited at least 2 times daily.Carey slept only a couple of hours at a time ,was irritable, had well developed scoliosis and only weighed 18 pounds.
She came into our house and family on June 26 1987. In July a gastrostomy tube was inserted. Baby food was introduced through the G tube and chloral hydrate at night for sleep. She showed significant improvement. She underwent an Inguinal hernia repair in April 1989 and came through like a trooper. Chest and UTI’s still were a concern at this time. She had bilateral heel cord lengthening done in April 1989 and was in a cast for 3 months.
We took her on a holiday to England that summer and had a great time. She remained cheerful throughout the whole trip and really enjoyed the attention she got from friends and often complete strangers. She is a very sociable young lady.
Throughout this period her weight reached 25 pounds but she would still vomit at least once a day with circamoral cyanosis. Tests were done which always came out negative. Carey’s liver was found to be the shape of a ball with the bowel flipping over it every so often. When this occurred we found that Carey had a hard time with her bowel movements and produced excessive vomiting. In October 1990 a fundoplication and cystoscopy were performed. She was in hospital for one week and hasn’t vomited since.. In addition her urinary and chest infections also decreased.
The next 4 years her health was very good with only the occasional illness. She became active and aware of her environment, enjoyed play and attempted vocalisation. She attended a structured school program and got great pleasure riding the school bus with her school friends. Her sense of humour was an asset. She enjoyed bouncing on the bed , getting around in a large walker and weight bearing. She was introduced to the swimming pool and bath nights were her best moments of the day.
In August 1994 we were introduced to SOFT at the conference in Toronto. We met many of you and gained insight into some of the potential problems with Trisomy 18. However it gave us encouragement to carry on and advocate in the strongest possible way for the needs of Carey.
Little did we know how soon we would need to advocate for her medical rights. . On returning to Edmonton with Carey we picked up our other foster care child Stephen, from a respite care centre, who had had a temperature of 104 for 24 hours. Six days later Carey woke up with a similar high temperature so we treated her symptoms. Two evenings later she went into respiratory distress so we took her to the ER. Now the question of “resuscitation” came up by the emergency staff, the issue being Trisomy 18 and the general prognosis that goes with it. We demanded treatment as would be given to any normal child in distress.
Carey was admitted for IV antibotics. There was no improvement and she got worse. Her urine output decreased, respirations were laboured, she was puffy, and exhausted. They refused to give her chloral hydrate at night and 3 days into this as my husband and I were bathing her she stopped breathing. A code was called and CPR done without intubation. She got lasix and the chloral. She settled down and finally slept.
The question: re Resuscitation and intubation, what should be done? We forcibly informed the interested parties that they again should do what they would do for any other normal child. At 9 pm that evening she was having problems so at 11pm she was intubated sent to the PICU and hooked up to a respirator. Four days later Carey obligingly extubated herself.
Our girl came home four days later but her lungs had sustained some permanent damage. She was on oxygen full time at 2 litres. She then developed a rapid kyphosis which also impaired her breathing and mobility. Chest and UT infection increased. She had to be cathterized since she tended to hold her urine for as long as 18 hours. A new wheelchair was ordered for her comfort.
She was placed on prednisone for 3 months which resulted in a weight gain to over 100 lbs. The kyphosis progressed rapidly and we couldn’t use the brace for the scoliosis . With great trepidation we had Harrington rods inserted on March 1995,. She came home on March 31st. We started in earnest in looking at her diet since she had mobility and lifting problems because of her weight gain, in addition to an increase in chest infections. We placed her on a diet of 600 calories.
This worried us. We started looking at alternatives to the diet. A local homeopathist suggested we take Carey off the diet she had been on for years and give her vegetables, fruit , tofu , nutricom supplements, tissue salts, and 1000mg of vitamin C, plus homeopathic remedies for specific problems such as chest and urinary infections. Her pediatrician agreed to keep a vigilant watch on her to make sure we were not slowly starving her. Carey’s improvement was a tremendous. His statement was” he doesn’t know why this change is working, but don’t touch anything in regards to “madam’s” diet”.
Carey now weighed 55 – 65 Ibs, stood 4′ 6″ tall, was alert and had returned to the previous activity level of 1994. Her school attendance was impressive. There were no signs of puberty, she was now 14, but her attitude about getting up and going to bed at a reasonable hour told us she was happy to assert her teenage rights..
Carey’s dependence on O2 was for 2 years before we finally weaned her off. Her diet continued to be modified and she moved into a period of good health. In 2010 however a pneumonia meant she was back on the O2 once again.
Now came what was to be her final challenge. Scans showed that her gall bladder needed to be removed, so in March 2011 a successful operation was completed . The gall bladder was small but heavily packed with stones.It has always been our protocol never to leave children in hospital without at least one parent in attendance.
This time after reassurances that any change in Carey’s disposition and we would be notified ASAP. We left for a break to go home after 4 days in attendance. On a premonition we called back to the ward to be informed that Carey had been transferred to a recovery ward. We immediately returned only to discover that this young lady with no verbal communication skills and no active monitoring had been placed by herself in a room distant from the nursing station. To our horror she was deathly white, absolutely scared. Calling a nurse in charge , new to her care , that something was desperately wrong.
It turned out that Carey was suffering from a large bleed from the liver, caused by giving her adult doses of heperin ( to prevent clotting during the operation ). No questions, she was immediately returned to the theatre to seal the bleeds. She had lost 3 pints of blood. Seven days later we brought her home.
Over the past few months Carey began to show evidence of seizures. She went on to seizure medication. It changed her personality somewhat, she was listless at times and subdued. Other times she was her normal cheerful self.
On the afternoon of Saturday June 16th she had what appeared to be a major episode. We nursed her through the night as we had done before. Sunday morning we called the EMS Carey was not in the ambulance for more than 5 minutes before her heart stopped. Resuscitation revived her but because of the DNR that we had on her for many years, life support was withdrawn. On Monday the 18th she passed away peacefully within 2 hours of her oxygen removal, her family surrounding her.
On reflection… Carey Ann whom many of you met during our conference visits, 8 in all. Toronto, Chicago 3 times, Denver, Salt Lake city Roanoke and Sioux Falls was the brown haired, blue eyed girl with the wonderful smile. Happy, a sense of humour, mindful of her rights, always working on her abilities, with a spirit to survive no matter what health challenges or adversities that came her way, and yes she was a full Trisomy 18.
Over the years we have passed on through the SOFT magazine many of the precious moments that endeared her to her family. Like the time she snuck the flow pen from dad’s shirt pocket and proceeded to apply her version of make up ( Jan 2010 ). The time she dressed up as Brave heart , helped this time by dad, (April 2010 ) Her pure pleasure on the Disneyland trip and the multiple rides on the Small World boat trip.(May 2010) In Chicago the sheer pleasure she showed being held by her Dad on the boat trip watching the lightning in the distant clouds.
Carey was a well known sight in the Sherwood Park neighbourhood as she rode her special bike on the bike trails in the summer. ( October 2009 ) Often met by RCMP officers also on bikes and given an escort along part of their patrol. She attended a stimulating school environment in a special needs class. She graduated and moved to Robin Hood a wonderful not for profit organisation where each week day she participated in a program designed to meet her needs for socialisation, physical stimulation and skill development.
Throughout the years she travelled greatly, dipping her feet in 3 oceans. She loved to travel, adapted readily to new locations as long as mum and dad were with her.
As her eldest sister said at her funeral, “Carey Ann was the perfect sister, she never borrowed my clothes, she never took my boyfriends, always willing to listen to my troubles and above all never told my secrets”.
Over the years many special needs and terminally ill children came into her life here at home. Some died and some went for adoption.
In those days of sadness Carey became our strength. She was aware of the increase in activity at the time of loss and responded to us with a loving smile and a closeness that gave us the strength to continue. Carey became the “glue” that kept the family together. She had become a source of great strength in the home.
So in answer to the question posed at the beginning, why in her passing has Carey had such an effect on those around us? Children such as these ask nothing of you but care and love. They return this love in buckets full.
We attempt to help these children to achieve as much in life as they possibly can. We watch them, nurse them and take pleasure in the smallest of their achievements. Apart from our 4 natural children Carey Ann was the greatest gift given us. We cherished this gift for 26 years. In her passing many people have shared our loss and have expressed great sadness. We now move on comforted in the knowledge that she no longer suffers and is in peace, at rest.
As my wife and I see it, her enduring legacy here on Earth was to bring people together in love and fellowship. Something she has achieved in great measure.
Many thanks to all of you at SOFT in these difficult days. Your support and best wishes have been greatly treasured never to be forgotten.
all our love,
Marie and Craig Donaldson