I live in Dease Lake, in the far north of British Columbia, with my husband, Shane, and our 4 children. Our youngest, Margaret, is the reason our family has become familiar with Variety and the invaluable services they provide. This is Margaret's story...
At 6:00 am November 5, 2008, I awoke with what I thought were Braxton Hicks contractions. I was 24 weeks pregnant. At 8:00 am, I told my husband, that maybe he should take me to the clinic. To my horror when we were finally examined at the clinic, the Doctor told me I was four centimetres dilated and I needed to be Medi-Vac'ed to Vancouver. En route, a few hours later, the Neonatal Transport team informed me that my labour had progressed too far and we weren't going to make it to Vancouver. We made an emergency landing in Terrace. The Neonatal Delivery Team was going to be flown up from BC Children's Hospital in Vancouver to deliver my baby in the Terrace Hospital.
Margaret Jade was born that evening. She weighed 740 grams – just 1lb, 10oz. She was wrapped in plastic to keep her body temperature up while they worked on her. Margaret was only breathing 40% on her own. She was intubated, given oxygen and immediately given an arterial intravenous in her umbilical cord, with all sorts of medications. Her eyes were still fused shut and her skin was transparent. I could see every vein, every bone, inside her tiny body. She was the most alarming, yet beautiful little soul I'd ever seen! Once she was stabilized inside an incubator and prepared for transport, we were flown to Royal Columbian Hospital in New Westminster, where she began her 125 day journey, in-hospital.
When I was discharged from hospital, I needed to be as close to her as possible and my only option was to stay at a Bed and Breakfast nearby. Even with a hospital discount, $75.00 a night is not cheap, considering that I still had to feed myself and worry about transportation to and from the hospital. Meanwhile, back at home there is still a mortgage, other regular household bills, and three kids to feed. Needless to say, the Visa was maxed-out pretty quick.
My husband and I thought that we had good private medical insurance plan that was going to help cover most of our costs while Maggie was in the hospital. This was the most stressful time of my life and my family's lives in many ways. The absolute last thing a person should have to worry about in a situation like this is finances. I found myself unable to sleep at night. I had been torn away suddenly from my other three babies. I spent 12 hours a day by Maggie's side, pumping milk every three hours and forcing myself to eat and rest during the other 12. My husband did his best to travel the 1,000 kms back and forth to see Maggie, leaving our children with his parents. More than anything, I just wanted our family to be together.
During this time, Maggie had good days and bad days. She fought hard to survive. She had difficulty gaining weight, being weaned off of oxygen and it seemed to me that she was in pain. She received numerous blood transfusions and treatments but eventually required Heart Surgery. She was transferred to BC Children's Hospital in Vancouver when she was a month old. It was there that they discovered something very rare and potentially fatal. She had a broken piece of a Suction Catheter lodged in her lungs. It had to be removed - a procedure they had never done before. Maggie’s heart surgery was a success and she remained at BC Children's Hospital for a month before going back to Royal Columbian.
Words cannot express how helpless and empty I felt this entire time. Knowing this tiny baby should still be safely growing inside me, yet there she lay, endless wires, tubes, machines. I was watching other people handling and caring for her, doing all of the things that I felt I should be doing. Having to sing to her through plastic walls, and only barely touching her, with my hands squeezed through the accordion-like access cuffs... only able to hold her once in awhile. It was absolute torture, to have to walk away from her every night, to an empty room.
Just before Christmas our family was reunited. Things became somewhat bearable though it was exhausting trying to balance time between Maggie, pumping milk, the kids, my husband and everything else. On Christmas Eve, our insurance company called us and told us that Margaret's coverage under our policy didn't officially begin until she was discharged from hospital.
It was heartbreaking to think that all of a sudden, with all of this healing our family had to do, that we were broke! How were we going to pay for everything? Did this mean I wasn't going to be able to stay here with baby anymore?
Maggie started making improvements after her ordeal and had a lot of catching up to do. She needed me and I needed her. When I felt better and was able to return to the hospital, a hospital social worker assisted with a simple application process and that's when we met Variety - The Children's Charity. Within a couple of days Variety helped pay for my accommodations and assured me that they would make it possible for me to stay by my baby's side. When I received that call it was, quite possibly, the greatest relief I have ever felt.
Maggie was eventually transferred to Prince George Regional Hospital and I was able to stay in her room with her for the next 6 weeks. When we were discharged from the hospital, Variety, once again, came to our aid. Variety made it possible for us to fly home! I was exhilarated to finally be bringing my baby home. We even managed to make it home in time for my son's second birthday!
Time passed quickly and it seemed as though life was just getting back to normal for all of us. Then it was time for Maggie’s neonatal follow-up and appointment with the audiologist in Vancouver. We didn’t have the financial resources to get Maggie to her appointments so Variety graciously stepped up once again. They assisted us with travel and accommodation costs. It was such a relief to just be able to focus on Maggie's appointments and not on the financial burdens.
Maggie is a wonderfully happy baby in spite of everything she's endured. She is truly amazing. We will always be grateful for the help that Variety provided for our family and hope one day we will be able to reciprocate such kindness. Variety and all of Variety's Children will always hold a very special place in our hearts and prayers.
