It’s every parent’s nightmare. Your seemingly healthy baby all of a sudden doesn’t look okay. You know something is wrong. Your motherly intuition tells you so. But doctors say she’s fine. And then when she doesn’t get better, they tell you she’s not.
This was the reality for Sarah St. James, a mom of two from Buzzards Bay, MA. It is a story of love and courage and fate and generosity. It is a story of what it means to have a fighting spirit. This is the story of Baby Sloan.
Sarah tells Babble that soon after Sloan’s birth last spring, she and her husband sensed something was wrong.
“As Sloan was growing, my husband and I had concerns. Specifically, her persistent jaundice and increasing abdomen,” Sarah says. “As a parent, we put our trust in medical professionals and they were telling me she was ‘fine.’ But in the back of my head, and in my gut, something wasn’t right.”
Thankfully, Sarah followed that intuition and took her daughter to Boston Children’s Hospital, where she was given devastating news. At 3 1/2 months old, Sloan was diagnosed with biliary atresia.
“This is a rare (1 in approximately 18,000 infants) and life-threatening condition with no known cause,” Sarah explains to Babble. “Biliary atresia is a condition in infants in which the bile ducts inside or outside the liver do not have normal openings. Bile serves two main functions: to carry toxins out of the body, and help the body digest fats and absorb important vitamins. With biliary atresia, the bile becomes trapped, builds up, and damages the liver over time. By the time Sloan was diagnosed, she was already in stage 4 liver failure.”
Her daughter was dying, and she needed a liver fast.
That’s when an angel came and saved their little girl. After no family members were deemed a match for Sloan, Sarah and her husband Chris took to Facebook to plead for help. And that’s how a police officer by the name of Lt. Steven Tenney came into their lives.
According to Today, 4o-year-old Tenney, of the Keene Police Department in New Hampshire, found out about Sloan’s dilemma through his sister-in-law, and was determined to help if he could.
As it turned out, Tenney was a match. He then had one-fifth of his liver removed. It was then taken to Sloan at Boston Children’s Hospital 20 miles away.
The surgery was a success — and soon after, Tenney got the chance to hold baby Sloan for the first time.
“It was incredible,” Sarah told Today. “You would never know what he had gone through. I’d like to think he was a little proud of what he had done. He deserves to be. And him holding her, it’s just a new bond created for life.”
“He gave us Sloan. We were going to lose her,” she adds.
Sloan is now a thriving, happy baby at 9 months old.
“All things considered, she is doing great!” Sarah tells Babble. “She is working towards her developmental milestones, loves to eat, has six teeth and adores playing with her older brother, Carter (2 1/2).”
However, Sloan has had her fair share of complications as well.
“Medically and for our family, post-transplant life has brought its own set of challenges,” Sarah says. “She has had two episodes of rejection that have required re-admission to Boston Children’s Hospital for treatment with IV steroids and she has constant med adjustments at home. We are in ongoing contact with our team at BCH for follow-up visits, and she goes to a satellite lab for bi-weekly blood work. She is still on six medications in the morning — one during the day and four at night. All that being said, if you saw her, you would never know what she’s been through. She’s amazing to me. She is a warrior with an infectious smile and admirable spirit.”
As for the future, Sarah is extremely optimistic.
“[Sloan] will be able to go to daycare, school, vacations, and live a normal life — something she wouldn’t have had without this transplant,” she shares. “There is no research or reason to believe this liver shouldn’t last her a lifespan. Our liver team tells us the first one to two years after transplant are tough, with these rejection episodes and med adjustments, but their positivity and Sloan’s demeanor are so amazing and what help me on a daily basis.”
Sarah tells Babble that there are three primary reasons for telling her story to the world. One, to encourage everyone to sign up to be an organ donor so they can potentially save a life. Two, to tell parents to always listen to their gut. (It’s telling you something for a reason!) And three, to ask for financial assistance, as Sarah has had to quit her job to care for Sloan and their medical expenses are growing. If you’d like to contribute to the family’s You Caring page, you can do so here.
Keep up the good fight, little Sloan! It sounds like you’ve got a bright future ahead of you and a new police officer friend if you ever need help along the way.