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Sonya D: Surviving Daughter of Systemic Scleroderma Patient

On April 9th at 6:30 AM, my mom passed away peacefully with her best friend, my dad, at her side.

Home Sweet Home by Shelley EnszMy name is Sonya and I am twenty-six years old. I was born in Canada to Portuguese immigrant parents. Both my mom and dad left Portugal at a very young age in search of a new life, like many other immigrants. Both my mother and father were pretty healthy people, and never had any health problems.

In 1995, my mom had her gallbladder taken out, but she didn't have any other major health conditions.

In 2000, my mom began to lose quite a bit of weight, but not by choice. She began to do many tests and exams, but no one could discover what was causing her to lose so much weight. My mom was 4'11 and weighed about 50 kilos when she was healthy. Gradually over the years, she kept losing weight, where last year she got to weighing 38 kilos.

I currently live in Portugal. It will be three years at the end of July, so I only had the opportunity to talk to my mom over the phone, and see her in the summer months to really know what was going on, what symptoms she seemed to have, and to try myself to understand why she was losing so much weight. She had difficulty eating, drinking and digesting her food, but yet doctors had no clue. She was always going to different doctors to see what was going on, doing every exam imaginable, but no one seemed to give her an answer.

Last summer, upon her return to Canada, she was seen by a doctor, who told her she had scleroderma (systemic sclerosis). Neither of us had ever heard of this disease. When she told me what they had discovered, I went to the internet to find out what it was.

They had initially suggested that she get a feeding tube put into her stomach to supply her with the nutrition she needed, but then her doctors didn't proceed because of the H1N1 flu virus that was spreading.

In January of this year, she began to have difficulty breathing, eating, swallowing, getting out of bed, climbing stairs, and doing normal daily tasks. Doctors would not admit her into the hospital.

On February 12th, my father could not take her suffering at home anymore, so he called an ambulance, and she was finally admitted to the hospital. Once I received the phone call, I flew from Portugal to Canada to be with my mother.

On February 14th I got to see my mom. She was very weak, having difficulty breathing, difficulty eating, and talking. That night, she stopped breathing and was admitted to the ICU. She was intubated and put on a ventilator which did much of the breathing for her and a KO feeding tube was put into her nose. A week later, they tried to extubate her, but it was unsuccessful and she was intubated hours later. Two days later, she was extubated once again, and this time she was able to be off the ventilator. Unfortunately, this improvement didn't last very long. She caught a pneumonia on February 26th, and was intubated once again, and a central line was put into her neck, because they weren't able to find her veins in her arms. The following week, doctors decided that it would be best that she had a tracheotomy done, to get her moving out of her bed, and on the road to recovery.

On March 7th, she had her trach put in. She was on and off the ventilator for a few weeks and by March 17th she no longer needed the ventilator. She was taken out of the ICU March 19th, and put onto a regular floor, but continued with the feeding tube. When she was taken out of the ICU, I really thought that she was on the road to recovery and that once she was able to eat on her own once again, she would get even better, and then released. My mom wanted to get better so that she would be able to attend my wedding, and I had my date set for August 13th.

While on the floor she had many complications with her feeding tube, because of mistakes made by the nurses. Unfortunately because of these complications, she had an ulcer in her intestine. She lost a lot of blood due to this ulcer and had to have a blood transfusion.

April 1st, my mom turned fifty-four years old. Unfortunately it wasn't the best birthday, but she did laugh, make jokes, and looked like she was getting better. She had an okay Easter weekend, and just wanted to begin eating so she could get stronger.

On April 5th, my mom began to eat pureed foods, and was allowed to drink water.

On April 6th, upon my arrival at the hospital, my mom was sitting on her bed. I asked if she was okay, and she said not really. She was having difficulty sleeping during the nights, because she still felt some air through the hole where she had her trach. April 6th was a day of hell. Later that morning, she was in bed and I tried to talk to her, but she wouldn't answer me. She was there but it was as if she wasn't. My father soon arrived and also noticed that she was not well. The nurse came in and did her daily check of her blood pressure, oxygen level, etc. and everything seemed to be okay. But for me and my dad, something was not right. I asked for a doctor to come examine my mom, and my father and I were right, she wasn't alright.

My mom was having difficulty breathing. The RACE team came in, did a blood gas test, and gave us an answer we didn't want to hear. Her CO2 level was at 127. They did a chest X-ray, and there didn't seem to be anything obstructing her airway. Her lungs were failing due to the scleroderma. The doctors called my father and I into a room, and told us we had to make a decision, either put her back into ICU on a ventilator, which the ICU doctor said she would never come off of, and that later we would have to pull the plug, or let God take her peacefully.

My father, two brothers and I made the hardest decision I have ever had to make in my life. We were letting her go.

On April 9th at 6:30 AM, my mom passed away peacefully with her best friend, my dad, at her side.

To Contact the Author

Sonya D.
Email: Withheld by request
Story edited 07-13-2010 JTD
Story posted 07-14-2010 SLE

Story Artist: Shelley Ensz
Story Editor: Judith Thompson Devlin
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ISN Story Editor: Judith Thompson Devlin

Photo of JudithJudith Thompson Devlin is the ISN Story Editor for this story. She is also lead editor of the ISN's wonderful Voices of Scleroderma book series!

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Patricia Ann Black: Marilyn Currier, Shelley Ensz, Richard Howitt, Gerald and Pat Ivanejko, Juno Beach Condo Association, Keith and Rosalyn Miller, and Elaine Wible.
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