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Sophie’s Story

Site created on April 15, 2023

Our daughter, Sophie Marie Burrows, at three months old was diagnosed with a rare liver condition called Biliary Atresia. Roughly 1 in 15,000 children suffer from this disorder that begins in infancy. From birth, or soon after, the ducts which are designed to carry bile from within the liver down to the gall bladder and small intestine become inflamed or blocked. This bile then backs up into the liver and causes scarring and damage.

On March 27th, Sophie underwent an emergency surgery associated with Bilary Atresia called a Kasai procedure where her gall bladder was removed and her small intestine was cut and attached to the bottom of her liver. Unfortunately, after the past 3 months of backed-up toxins, her liver was in very poor condition, has advanced cirrhosis, and required a liver transplant.
After three weeks in the hospital in Anchorage, we flew to the Seattle Children’s Hospital on April 17th.

We have been staying very near the hospital at the Ronald McDonald house and it has provided an incredible comfort being so close to our medical team and being surrounded by a community of families who are also going through hard things with their kids.
On September 22, 2023 after almost 5 months on the waiting list, Sophie received a liver transplant from a deceased donor. The 11 hour surgery went really well and her immediate recovery was mostly as expected. The next 2 months was mostly spent in-patient dealing with several typical and some atypical issues associated with such a major surgery.
In the months after that we have been admitted to the hospital quite a few times with stays ranging from several days to a couple of weeks. There is no such thing as a normal recovery from a transplant and each case is different. Sophie has been very resilient, happy, cheerful and strong in the months of recovery. We go to the hospital weekly for blood labs and see our transplant team at least 2-3 times monthly.

There needs to be at least a month of consistent and stable results with her bloodwork for the team to feel comfortable sending us back to Alaska and so far that hasn't been achieved due to a number of complications.

Please keep praying for us to have wisdom, which is what Sophie’s name means. And pray for her continued healing.
Thank you so much ♥️ ♥️♥️
Jon and Katie Burrows

Ps. Under “ways to help” tab you will find the “Gofundme” page.
- (https://www.caringbridge.org/visit/teamsophie2/amplifier/journal/643b2c7a153b09a3751037f8/auth/none/amp)heart (https://www.caringbridge.org/visit/teamsophie2/amplifier/journal/643b2c7a153b09a3751037f8/auth/none/amp)

Newest Update

Journal entry by Jon Burrows — Apr 18, 2024

Thank you all SO much for praying! God provided and answered our prayer. The biopsy results showed that Sophie is not experiencing rejection. This is great news and means that we don't have to spend the next few days in the hospital getting serious IV steroids to suppress her system. This is such a relief for Jon and I and so much healthier for Sophie's overall little body. Praise the Lord. It is such a treat to have this positive answer to prayer. We will retest her blood labs on Monday and still make minor course corrections with her medications if there is lingering inflammation. Thank you all again for praying! My heart feels so much lighter.

A big next prayer request will be Jon leaving for much needed work in Alaska May 5th through May 26th. Obviously there are still a lot of unknowns on a weekly basis here with Sophie medically. It seems most likely at this point that Sophie and I will remain in Seattle for that time period, but things change quickly and it could get tricky if the doctors say we can leave and Jon is gone working. Please pray for God's way forward and for us to place our trust in Him and just do the next right thing in faith.

Katie

Read More of the journal titled "April 18, 2024: Answer to prayer on our 1 year anniversary!"

April 18th 2023: Leaving Providence Hospital in Anchorage for our flight to Seattle (Sophie 4 months old)

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