The West Family, James and Stacey, Rachel, Caleb, Caroline and Luke.
Dictionary results for:
a surprising and welcome event that is not explicable by natural or scientific laws and is therefore considered to be the work of a divine agency.
a highly improbable or extraordinary event, development, or accomplishment that brings very welcome consequences.
If you ask Stacey and James West of Alberta, the above dictionary definition should come with a picture of their seven-year-old daughter, Caroline.
That’s their only explanation for the current condition of their daughter. Caroline was born in November 2011 with a heart defect common in children with Down syndrome, which Caroline also has.
The sweet, smiling Caroline has had a difficult life. She started at six months with open heart surgery for her heart defect and things continued to go from bad to worse over the next 5 ½ years.
Caroline was in the pediatric intensive care unit multiple times for a variety of issues, including trouble breathing. She also had trouble eating and her stomach was often distended and she was unable to keep food down. At 15 months she had a gastric tube with a nissen wrap, according to Stacey. That means Caroline’s stomach was wrapped around the gastric tube to prevent reflux.
“By the time she turned two,” Stacey continued, “She was down 20 pounds and was malnourished. We just couldn’t get more food into her.” “We went to VCU Health Children’s in Richmond because the doctors knew something more significant was going on,” she added.
Significant would prove to be an understatement. For the next five years, Caroline would be in and out of the hospital, including additional stays in the PICU, to the tune of more than 17 times. She also began receiving home health visits from VCU Health Home Health nurses.
Caroline had, and that is the key word, HAD, neuropathic dysmotility of the small intestine. Dysmotility is a condition in which muscles of the digestive system become impaired and changes in the speed, strength or coordination in the digestive organs occur.
“The way the doctors explained it to us,” Stacey said, “Was your digestive system is like dominoes, each part builds on the previous part and Caroline had a very rare condition with no cure. Her intestines didn’t really function.”
As Caroline’s health continued to deteriorate, additional medical measures were required.
In February of 2014, Caroline received her first central line that was to provide her with as much nourishment as possible. Over the next four plus years, Caroline suffered 21 central line infections and had to have her central line replaced multiple times.
“I told my husband Saturday (March 2) was the first March 2nd in three years we weren’t in the hospital,” Stacey said. “She had to have emergency surgery for her central lines on multiple occasions. Last March, she was in the hospital with a 105.6 degree fever and they could not find a blood pressure.”
In 2016, doctors suggested Caroline go to Georgetown Hospital to investigate having a small intestine transplant. The Wests went and the doctors there had a keen interest in trying the transplant. “We came home and did a lot of praying,” Stacey said. “The doctors couldn’t give us any outcome better than 50 percent that the transplant would be a success, so we decided against it.”
From October 2017 to October 2018, Caroline was hospitalized nine different times.
“Caroline acquired an immune deficiency and at times her white cell count was two – similar to a cancer patient during chemotherapy,” Stacey explained. “She just couldn’t fight off infections. We had a doctor who said he was concerned that Caroline just wouldn’t be able to continue fighting off the infections.”
Prayer has always been an important part of the West family’s life, according to Stacey. She also talked about the support of their church and other churches in the area and the community as a whole supporting them and Caroline, not to mention their families.
“It has literally taken a village to survive these last seven years and without family and family friends we wouldn’t have made it! I want to express our great appreciation of all of the medical staff because while they did not heal her they surely kept her alive for the last seven years,” Stacey said.
Doctors were telling the Wests that there really wasn’t anything else they knew to do to help Caroline. The infections were continuing and doctors expressed grave concern that Caroline was becoming more and more susceptible to infections and less and less able to fight them off.
The doctors at VCU Health suggested another motility study to check on Caroline’s digestive system. They explained that sometimes things change. What they didn’t know was how much things changed. In fact, they had no medical explanation.
In November 2018, a second motility study was done at Ann & Robert Lurie Children’s Hospital in Chicago. “The doctors were pretty encouraging while they were doing the study,” Stacey said. “They were surprised that Caroline’s intestines weren’t dead or dying because they were not being fed in the normal way. But they said it was nothing short of miraculous and they had never seen it before that someone with neuropathic dysmotility of the small intestine would have their small intestine suddenly begin working.”
“We finally saw some light at the end of the tunnel,” Stacey said. “In four months time we went from worrying about Caroline even surviving to her miraculous healing.”
So after five years of pulling around a backpack full of tubes and bags for her central line, Caroline was suddenly being weaned off the central line. “For the first time Caroline can really eat,” Stacey said. “She was able to have a birthday cake for her birthday. We know what happened – it was a miracle.”
“We want people to know miracles still do happen,” Stacey said.
James said, “Before Caroline was born Stacey and I prayed that God would use this family as a visible example of what God can do. Over the years we have struggled more than words could explain but one thing for sure is the love of Jesus never left us. God has used family, friends, and complete strangers to let us know not to give up. Just being in the middle of this miracle is absolutely amazing. We praise God every day for our children and how He has and will continue to use this family for His glory.”
Both West parents understand the stress Caroline’s battles placed on the entire family.
Stacey said, “Our children, Rachel, 12, Caleb, 9, and even Luke who is 20 months, have had to experience a lot in their young lives. They’ve had to grow up so much. They had to sacrifice so much because of what Caroline was going through. Missed birthdays and vacations. They had to deal with things most children do not have to face. They love their sister so much and we have been so blessed as a family.”
Stacey said she also appreciated all the doctors, nurses and specialists who helped take care of Caroline in her first seven years of life. “We’ve received more help from people than anyone deserves,” she said. “The (VCU Health CMH) Home Health nurses were amazing. Every one of them. They have been coming into our home every week for five plus years. As people we have become friends. When you share something like this with people, you form a special connection.”
Stacey said that connection is the only thing she will miss about Caroline’s time battling for her life. The prognosis for Caroline is good, but she will always have testing in her future.
Caroline opening her gifts of beach supplies at a party hosted by VCU Health Community Memorial Hospital Home Health. The Wests have not been able to go to the beach since Caroline became ill. They plan a trip to the beach as soon as the weather warms up.
Julie Shotwell, nurse practitioner, and Caroline. Julie was the first person to take Stacey seriously when we knew something was really wrong with Caroline. Julie was at VCU Health in Richmond at the time.