My Great Strides Story
Brooke Smith
Fundraising for Grand Haven Great Strides
Brooke Smith
As many of you know, my daughter Scout, was born with Cystic Fibrosis. Cystic Fibrosis is a genetic, life-shortening disease that devastates the lungs, pancreas, and other vital organs. CF makes it difficult to breathe and fight life-threatening infections, often leading to extensive lung damage and respiratory failure.
We were made aware of her CF diagnosis around 18-20 weeks during pregnancy through an invasive procedure called amniocentesis. Scout and I were both being monitored closely throughout my entire pregnancy by Maternal Fetal Medicine, sometimes multiple appointments a week. Each time I would go, it seemed like we would find something new and concerning on the scans, The doctor and ultrasound techs were keeping an extra close eye on her bowels in particular. Initial scans showed bright bowel, then later test showed bowel dilation which could lead to a blockage with possible rupture. On October 9, 2023 I went in for a routine non-stress test, but Scout was not responding appropriately, so it was deemed best that we have an emergency C-section. Scout was born 8 weeks premature and rushed to the NICU for monitoring.
The following day, October 10, 2023 Scout had emergency surgery herself due to abnormal abdominal distention with discoloration. Scout had what is called Meconium Ileus which is where her first poop "meconium" became too sticky and hard to pass (due to her cystic fibrosis) and she ended up with a bowel blockage. Her blockage was so devastating that her bowels twisted upon itself and some of her bowels died. She ended up having surgery to removed parts of her bowel and ended up having an ostomy for 6 weeks. We spent almost 60 days in the NICU before finally going home.
This first year has been challenging not only adjusting to life as first time parents, but also doing our best to learn how to care for a child with Cystic Fibrosis. From the outside life looks pretty normal, and that's how we want it to be. We just tend to have more clinic days, breathing treatments, CPT, sterilization, and medications than most. Despite her rough start to life, Scout is growing happy and healthy! We have been so incredibly blessed to have a great support system along the way.
There is currently no cure for cystic fibrosis and too many people with CF die young. I’m walking to help change that reality. I'm walking to hopefully change CF to stand for Cure Found.
We were made aware of her CF diagnosis around 18-20 weeks during pregnancy through an invasive procedure called amniocentesis. Scout and I were both being monitored closely throughout my entire pregnancy by Maternal Fetal Medicine, sometimes multiple appointments a week. Each time I would go, it seemed like we would find something new and concerning on the scans, The doctor and ultrasound techs were keeping an extra close eye on her bowels in particular. Initial scans showed bright bowel, then later test showed bowel dilation which could lead to a blockage with possible rupture. On October 9, 2023 I went in for a routine non-stress test, but Scout was not responding appropriately, so it was deemed best that we have an emergency C-section. Scout was born 8 weeks premature and rushed to the NICU for monitoring.
The following day, October 10, 2023 Scout had emergency surgery herself due to abnormal abdominal distention with discoloration. Scout had what is called Meconium Ileus which is where her first poop "meconium" became too sticky and hard to pass (due to her cystic fibrosis) and she ended up with a bowel blockage. Her blockage was so devastating that her bowels twisted upon itself and some of her bowels died. She ended up having surgery to removed parts of her bowel and ended up having an ostomy for 6 weeks. We spent almost 60 days in the NICU before finally going home.
This first year has been challenging not only adjusting to life as first time parents, but also doing our best to learn how to care for a child with Cystic Fibrosis. From the outside life looks pretty normal, and that's how we want it to be. We just tend to have more clinic days, breathing treatments, CPT, sterilization, and medications than most. Despite her rough start to life, Scout is growing happy and healthy! We have been so incredibly blessed to have a great support system along the way.
There is currently no cure for cystic fibrosis and too many people with CF die young. I’m walking to help change that reality. I'm walking to hopefully change CF to stand for Cure Found.
Comments