Brittney Toalston is sharing her family’s story with us about what it is like to have a family member with special needs in rural Alaska. This story will be delivered in four parts.
My family has lived in Barrow, 320 miles north of the Arctic Circle, for the last 29 years. My sister who is 18 years old has Trisomy 21 (Down syndrome). She also had open heart surgery when she was six months old; and has had two pacemakers in her lifetime. This is my story about what it is like to live in rural Alaska with a family member who has special needs.
I can tell you living in a rural area with my sister’s intense medical needs has been difficult and scary. It is still is scary to this day. The only way in or out of Barrow is by airplane. In other terms, we are a two and a half hour plane ride away from Anchorage in case of an emergency or if we need specialized medical services.
My mother, when she was pregnant with my sister, didn’t have any visual ultrasounds nor did she do any of the special tests to check the baby’s development. We had no idea my sister would come out just a little extra special than other babies.
My sister only had two chambers in her heart when she was born (typically there are four). If she didn’t have a heart problem, we would have been able to take her home the next day after being born. But we couldn’t. Because of her heart, she spent almost a year in the Seattle Children’s Hospital where she had heart surgery and other complications that came after.
My mother, who was the bread winner, had to stay back in Barrow. My step-father and I would fly to Seattle, Anchorage and Fairbanks for routine doctor visits. It was rough on our family. And this is how at the age of 12, I became mom #2.
Once we were able to bring my sister home, she was almost a year old and she came with attachments. Literally. She had a feeding tube through her nose and O2 machine on her 24/7. The doctors told us not to expect too much from my sister; as in having a “normal life”, eating on her own, walking on her own; let alone having a high comprehension level. So our family made it a mission to do the best we could with what resources we had in town.
For my 8th grade science project, with the help of my teacher who also has an older child with Down syndrome, we made it our goal to try and get my sister to crawl. Which, WE DID! It was such a big moment for our family that she was actually becoming mobile (even though we had to make sure she didn’t get snagged on her O2 tube). Once my sister figured out she could move and cruise around, she’s been doing it ever since. And she’s been showing our family that we can do more than what the doctors told us.
But we still had many health issues to navigate. Nurses from Fairbanks and Seattle had to show my step-father and I how to temporarily fix her feeding tube until she could get to Anchorage or Fairbanks, in case she ever pulled it out. Luckily, she never pulled it out! The tube was eventually moved to her tummy. We slowly introduced her to foods and slowly weaned her off the O2. We also started doing activities like yoga, dancing, making music part of her life and reading stories; we took her to my schools and events. We did everything the same, if not with a little extra nudge, just like if she was without Down syndrome.
Because of where we live, we only have one hospital up here in Barrow. We determined my sister needed the best care she could get and our small city couldn’t provide it. So we read as many articles as possible and corresponded with doctors in Seattle, Anchorage and Fairbanks. We committed to flying back and forth to each place 1 to 3 times a year to meet the medical needs of my sister. This continued for 5 to 6 years.
A few months after my sister’s 18th birthday, my mother started noticing a change in my sister’s demeanor. We are so close and in tune with my sister that this subtle difference my mom caught is the reason my sister is alive today J. We didn’t go to the hospital here first; we went to our family RN (who has been seeing our family for the last 10 years). Our RN told us we had to go to the hospital if we wanted to be sent out. Doctors in Anchorage told us to medivac out.
My sister’s heart wasn’t “firing off” when it should have. Her heart rate was so low that in the medivac out of Barrow to Anchorage (a little over an hour and a half flight) the machines couldn’t read her heart rate or pulse. Once we got to Anchorage, my sister went straight into ICU.
They put a pace maker in and sent us home. Providence gave us a little mouse-like machine to take with us. We would put the machine over my sister’s pacer to “do a read” and monitor its functioning.
Almost 2 to 3 months after her first pacer, my mother again started noticing my sister’s demeanor being different. And where her pacer was inserted (above her chest) it was firm, not soft. Our RN wasn’t in town, so my mother had to take her to our local hospital. When they did the ultra sound on her heart, it came back with fluid on or under the pacer.
The hospital here wanted us to wait and take antibiotics to see if it would clear up in a week or two. We didn’t want to risk it. We called our doctors in Anchorage ant they told us to get on the plane to come to them. We did. Once we got there she went straight back into ICU. The next day they had to operate on my sister again for her pacer. She did have fluid and bacteria on/under her pacer. They removed the first pacer and put in a new one down by her abdomen. During this procedure my sister’s heart stopped beating. They had to basically “jump start” her.
Each time we went in for her pacer, we’d spend almost 2 to 3 weeks in Anchorage…
Thank you Brittney for sharing your family’s story. We look forward to hearing the rest!