Claire’s Diagnosis Explained

July 6, 2020

Claire was diagnosed with Choledochal Cyst Type IVA at just 2 months of age. But what in the world are Choledochal Cysts and why have I never heard of this? 

For starters, choledochal cysts are extremely rare, especially in Western countries where only one in every 100,000 to 150,000 children are born with them. The condition is more common in East Asian countries, especially Japan, though researchers don’t know why. Girls are four times more likely to be affected than boys.

A choledochal cyst is a congenital anomaly of the duct (tube) that transports bile from the liver to the gall bladder and small intestine. The liver produces bile to help digest food. When a child has a choledochal cyst, a swelling of that duct, bile may back up in the liver.

Sometimes choledochal cysts can be found during ultrasound, but often children can go without symptoms or diagnosis until much later into childhood and sometimes even much later in life. To us, the events that led up to Claire’s diagnosis truly were the work of God’s protection. Her violent vomiting that Claire experiences at 7 weeks old, put her right in a small age range for another illness “pyloric stenosis” which is what prompted the doctor to send us for ultrasound in the first place. If Claire had been just two weeks younger or older, she would have missed that window and thus no ultrasound would have occurred.

If the ultrasound tech who was supposed to only be looking at her stomach on the scans hadn’t decided to look outside of her scope of work, the issue in her Liver never would have been realized. 

Claire could have ended up like so many other babies and children I sadly read about on the Facebook support group I found that lived for years with stomach pains that sent them repeatedly to the ER only for it to be explained away by “Colic,” or “IBS,” or so many other stomach issues. She could have ended up not only with a life of pain for who knows how long, but with irreversible liver damage or worse failure to her liver and/or pancreas. 

The craziest part of all this, her vomiting that led us on the path to her discovery was completely unrelated to her cyst diagnosis. Turns out she did have the stomach flu and since that weekend fighting off a stomach virus, Claire has been in complete health ever since. She made it through the winter with not even a sniffle or cough and anyone who has children, especially little ones in school like her brothers, knows how many germs come through your home during the winter. We all took our turn with one sickness or another, but Claire remained sickness free. I viewed that protection as an answer to my plea for God early on to reveal himself in the midst of all of this and to show me in some way that Claire had His protection. I believe He answered, and that sign from above continues to fill me with a sense of peace that even as she undergoes a very difficult surgery – she will remain under God’s wing of protection and care.

Psalm 5:11 

“But let all who take refuge in you be glad; let them ever sing for joy. Spread your protection over them, that those who love your name may rejoice in you.”

As I write this, Claire is just over a week away from her surgery which will take place on July 16th with the absolute best liver surgeons at one of the BEST Children’s hospitals this country and world has to offer. Her surgery will take between 4 to 6 hours and will include a complete removal of the cyst, her gallbladder and biliary tree, followed by a reconstruction and repair of her digestive system using a section of intestine. She will spend 5-9 days in the hospital recovering from surgery, and even though many hospitals are not allowing loved ones to stay with patients during surgery or recovery, Children’s hospitals allow two caregivers to be there the entire time; both Justin and I will remain by her side during her entire post-op.

What will her future look like? While choledochal cyst removal will reduce the risk for bile duct cancer, Claire will be at higher risk of developing cancer in the remaining bile ducts inside the liver compared to the general population. For this reason, they will take a very small portion of her liver during surgery to have a baseline of her liver function. She also has the risk of experiencing narrowing in the reconstructed bile duct, which can lead to complications such as cholangitis, intrahepatic calculi (stones) and pancreatitis.

Claire will have yearly follow-ups to monitor for these possible complications. She is a fighter though, and whatever lies ahead for this resilient, little girl, she will face with strength and dignity and without fear of the future!

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  • Jim, Kelly, James, and Baby #2 Merritt. July 9, 2020 at 4:44 PM

    What an amazing journey. Our thoughts will be will you!!!

  • Courtney Ruth July 9, 2020 at 4:56 PM

    We will be praying for sweet Claire and your family through all of this! Amazing how God works! ❤️

  • Sarah Lyon July 9, 2020 at 5:30 PM

    Claire, you are loved and known and held! We will be praying for your doctors and nurses on the 16th!

  • The Groh Family July 9, 2020 at 5:50 PM

    Our thoughts & prayers are with your family!🙏🏻🙏🏻🙏🏻 Sending love and peace .❤️

  • Jenn Mobilio July 9, 2020 at 6:22 PM

    She’s in the best possible hands.. Thinking of you all—hang in there! ❤️

  • Dawn Hertlein July 9, 2020 at 9:19 PM

    Prayers and love to Claire and your family! I pray she will have a perfect surgery and perfect healing!

  • Renee July 9, 2020 at 10:52 PM

    I have already been praying for Claire, the doctors, and your family. God is holding her in the palm of his hand as close to HIS heart as he can. ♥️❣️ Thank you for educating the rest of us and inviting us along on your journey.

  • Marilyn Hanson July 10, 2020 at 3:08 AM

    My prayers are with you, sweet Claire and her surgeons and nurses during this time. Your faith will pull you through and your confidence in the Lord to ease your burden will bring this miracle child back to good health. Sending an army of angels to her bedside on the 16th. God is good 💖💖

  • Amber Robbins July 10, 2020 at 11:24 PM

    Alisia what a great idea to explain Claire’s diagnosis and share the journey!!! Prayers have been and will continue to come your way!!!

  • Cathy Taulbee July 14, 2020 at 4:17 PM

    My thoughts and prayers are with Claire, as well as the rest of your family. Gos has this and will keep you in His strong and protective hands.

  • Kathy Paatterson July 14, 2020 at 8:03 PM

    Thoughts & prayers coming your way and for the entire family!! Prayers for the surgeons hands that will care for your sweet baby girl,.God will infold you under his wings, to watch and help you go through all of this.. I will enter her name on my prayer list…..May God give you all the strength you will need for now and the coming days ahead…

  • Dayna Nelson July 16, 2020 at 7:30 AM

    Prayers! She is a little warrior and will fight to be and stay healthy!