We are excited to share the story of an adorable redheaded family this week. Kate and her three daughters recently moved to Connecticut due to her husband’s position in the Navy. Her youngest daughter, Lucy, was diagnosed before birth with CF. Now 7 months, Lucy has the biggest smile, she’s starting to crawl, and Kate is in the process of figuring out how to work CF treatments into her family’s life.
N: Kate, thank you so much for taking the time to do this e-interview. Let’s start at the beginning – when did you find out that Lucy would have CF, and how did you react to the diagnosis? Did you do a lot of research, or did you avoid reading too much?
K: In 2011, when I was pregnant with our oldest daughter, my husband and I found out that we were both carriers for the Cystic Fibrosis gene. We did a lot of research during that time. We had an amniocentesis done and found out at 20 weeks pregnant that she would be a carrier.
We did not think too much more about CF until we found out we were pregnant with our second daughter. We also had an amnio[centesis] done with her and were very happy to find out she would be a non-carrier.
A few years later we decided to add another child to our family. We knew our odds of having a child with CF were 25%, but decided to take the risk. We found out on March 2nd, 2017 that our youngest daughter would have Cystic Fibrosis. I read as many articles as I could, joined several online forums, and talked with other moms of CFers. I wanted to be as prepared as I could for her arrival and I felt the best way to do that was to arm myself and my family with knowledge.
N: What are some of the interesting or important things that you learned from other moms of CFers during that initial learning and researching phase?
K: When we first received Lucy’s diagnosis I turned to the internet for more information. I found a message board on the Baby Center website that was specific for moms of children diagnosed with CF. Their very first recommendation to me was not to Google anything about CF because it was typically outdated or incorrect information. I turned to this group a lot whenever I had questions.
I was then directed to the CFMamas page on Facebook. This is a group of moms from around the world who either have children with CF, or have CF themselves. I have made friends with several moms across the US who all have children around Lucy’s age. It is amazing to be able to connect with these women who can truly understand what I am going through, the worry, the anxiety, the fear. It is also invaluable to have the wisdom of the seasoned CF moms. They have been through it all and are always willing to offer kind words of support, answer any questions, or just listen to your current fears and frustrations.
I think the most important piece of advice I have received from countless CF moms is to treat Lucy as I would any child. CF is part of who she is, she is a child first and deserves all the same experiences as other children.
N: How do you balance the time and attention requirements of CF with the rest of your personal and professional life, and the life of your family?
K: This is something we are still trying to figure out. Lucy’s treatments take a lot of my time, especially when she is sick with a cold. We have come to terms with the fact that not everything can get done in a day. The sink might be full of dishes and the clean clothes are sitting in a laundry basket but we are doing our best.
I try to divide my attention among my children as equally as possible, but at this point Lucy needs more of my time than my other two girls. We talk to our girls a lot about Cystic Fibrosis and how it effects Lucy and that right now she is needs a lot of my time. I think that CF is creating a very strong bond between my older girls. Because so much of my time is spent nursing, doing nebs, or therapy, it has forced Leah and Hailey to rely on each other for entertainment. They have also become very independent and enjoy helping in any way they can.
I am very blessed to be able to be a stay-at-home Mom and devote all my time to my family and home. My husband is a Navy Submarine Officer, but does all that he can to help lessen the burden when he possible.
We recently had to move from Memphis, Tennessee to Groton, Connecticut due to change in duty stations. We were planning on living in Connecticut for a few years, but the Navy can be very unpredictable and we are potentially looking at another move this summer to Washington.
N: That sounds pretty crazy – even without the additional factor of CF! With CF thrown in the mix, though, I imagine that there’s a bit of a logistical challenge to make it all work. How do you manage switching clinics during those moves?
K: We were very fortunate to have been a part of two amazing clinics so far…they made our transition very easy. We told Lucy’s first clinic in Tennessee we would be moving at her very first appointment. They did everything they could to make our move between clinics as seamless and easy as possible.
The hardest part about switching to a new clinic is getting to know the new team and having to go over her health history again. Lucy was only 5 months old when we moved, so thankfully her medical history was rather short. We also had to repeat some of the testing she had already had done, such as additional blood work and she will need another chest x-ray.
Since every person with Cystic fibrosis is so unique and present with such an array of symptoms, we were really looking forward to staying with the same CF team for an extended period of time, so they could truly get to know Lucy and treat her. We are praying our next transition will be just as smooth as the first, but are truly sad that Lucy will have to go to a third clinic before she turns one.
N: To go back to the topic of how your older daughters relate to CF – I’m very interested in learning more about this, partly because of my own experience. My younger brother has an immune deficiency, and I remember that when I was a kid, I was fascinated by what was going on with Paul and his doctors. I think I ended up feeling a bit more protective of him than a normal older sister would have - and definitely more interested in healthcare than I would have been otherwise!
How do you talk with your two other kids about Lucy's condition? Do you think their understanding of what Lucy lives with changes the relationship they have with her?
K: We have been very open with our older girls about Lucy’s Cystic Fibrosis. We have involved them as much as possible with her care. We read a few children’s books about CF, watched some videos made for children on YouTube, and did a lot of talking before her arrival. We try to keep everything as age-appropriate with them as possible. Mostly, we reiterate how important it is to help keep Lucy healthy and discuss ways they can help.
My four-year-old, Hailey, is very protective over Lucy. She always asks people if they have washed their hands and tells everyone, including all the doctors and nurses at the CF clinic, that Lucy has Cystic Fibrosis.
My oldest daughter, Leah, is a little more reserved about Lucy’s condition. She doesn’t like to tell other people that Lucy has CF. She and Lucy have always had a very close bond. Leah enjoys holding Lucy and reading to her.
N: It sounds like Lucy is a very lucky baby! I know she’s still little, but what are the most exciting milestones that she has reached so far?
K: Lucy is 7 months old and beginning to hit so many exciting milestones. She is starting to babble “mama” and “dada.” She has learned to sign milk and is just barely starting to crawl (I am not sure if that is exciting or terrifying at this point)!
I will be very excited when she starts to sleep through the night!
N: Aside from full nights of sleep, what are you most looking forward to in the future?
K: We cherish every minute we have together and try to focus on the here and now. We are looking forward to watching the bond with her sisters develop. For now, we are enjoying watching Lucy grow and discover the world around her.