Linnea Rae’s Story

Site created on March 2, 2021

Linnea was born with a condition called imperforate anus, also known as anorectal malformation. It is a condition that some children are born with that prevents them from having normal bowel movements.

In Linnea’s case, the anal opening is missing and the colon didn’t quite reach where it was supposed to. She may also have a situation where the rectum, reproductive system and urologic system form a single channel that both stool and urine pass through but it sounds like that is an easy fix if that is the case. We will find out more about later on in this journey.

Surgery to help correct the issue is required for children with imperforate anus. After surgery, most children are able to gain control over their bowel movements. As of right now, Linnea has completed her first surgical procedure of having the colostomy bag put on. The stoma (a small piece of bowel that was pulled through an incision made through her abdomen and sewn to her stomach) is large and purple because her colon was so dilated that it basically bruised from the stretching. Now that they have emptied her colon, we just need to wait for the swelling to go down and her stoma will become smaller and more pink as it should be.

The rest of the process is a little unclear but the general plan for now is to have monthly check ups of her condition until she is about 4 months old. That is when we are planning to perform the second surgery. As of right now, that is the procedure to create the anal opening and attach it to her colon. From there, we wait for everything to heal and come back for hopefully the final surgery of removing the colostomy bag.

We have a lot to learn and a long road of doctors visits and surgeries ahead of us but if everything goes smoothly, our baby girl should be good as new by the end of summer!

This page has been set up to help keep people updated. We appreciate everyone reaching out and wanting to know more and how she is doing but repeating our updates over and over gets exhausting. So I hope this helps us all feel a little better about Linnea’s journey.

Thank you all so much for the love and support. All positive vibes for our little trooper are welcomed and appreciated!

Newest Update

March 02, 2022

Journal entry by Nancy Levercom —

Hello everyone! 
Linnea is now a year old! Crazy right!? So much has happened this last year and this caring bridge journal has been a wonderful way to share updates on Linnea. I’ve been being asked a lot of questions lately and I figured it’s time to make another update.

Linnea is now hopefully all done with surgeries. Now, it will just be a lot of learning how to care for her. She is healing well and she is happy and healthy. That is what matters most.

With her condition, things will constantly change and we will be learning a lot. These are things to help her live a normal life and she will not be slowed down due to her condition.

That being said, I will no longer be posting her journey for all to read. From this point on, her journey will consist of very private and personal things that could last her whole life. People do not need to know exactly what she needs to do behind closed doors and now that we are at a point where we will start learning what those things are, I will not be giving details. I will respect her privacy as some of these things may follow her into adulthood. Thank you all for understanding.

I also want to thank you all for following Linnea’s story and sending all the positive thoughts and prayers. She is still a rockstar and she is going to do amazing things. 
Read More of the journal titled "March 02, 2022"
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