Caring for My Newborn With CF and My Mental Health

Learning that my daughter has cystic fibrosis has been a struggle for me and my family, especially as I deal with postpartum depression. 

Oct. 27, 2022 | 5 min read
Haley Bond
Haley Bond
Newborn baby Eden laying in a basket.

CW: Suicidal ideation

This past July, my daughter was born with cystic fibrosis. When Eden was 1 week old, she had surgery on her intestines and we got an official CF diagnosis. My newborn was given a stoma — an opening on the abdomen for waste to exit through an ostomy bag — and was released from the hospital after two weeks. Most of the attention has been focused on her, of course, but I have been suffering right beside her. Since Eden was born, I have been suffering from postpartum depression. I have a history of it from having my son; but this time has been so much more intense.  

I am traumatized by the whole situation. I often find myself thinking about when I first saw Eden after surgery, fully believing I wouldn’t ever be able to bring my baby home. It’s hard to get the image of my child completely sedated out of my head. Her health has played a big role in why my mental health problems have been so severe this time around. Though she is doing very well now, I still have severe anxiety that she will go through another life-threatening emergency.

Since Eden was born, I’ve had more bad days than good. I feel so guilty that I am not being the best mother I can be right now. It takes every ounce of my energy to care for my daughter. I barely have any one-on-one time with my son. Getting used to having a baby is hard enough — it is even harder when the baby has medical issues. If I didn’t have other humans depending on me, I would spend all of my time sleeping to avoid feeling depressed. It got so bad that I had to be hospitalized for suicidal thoughts a few weeks after she came home. How can I be suicidal when my kids are so wonderful? My kids NEED me to function. I am so blessed, yet I feel so completely overwhelmed with negative feelings. 

I am trying my best to get our family into a normal routine, but there is so much involved in making sure Eden’s needs are met. On top of a baby’s general needs, she needs care in relation to cystic fibrosis and her ostomy bag. It’s a lot of work and — for the most part — I don’t have any help. I do not have a huge support system. My husband tries his best, but he also has a lot on his plate. I am so tired in every way that a person can be. 

It feels as if everything is falling apart. We have been struggling financially, which really doesn’t help. As a mom to a newborn, this should be a time filled with love and laughter. My poor kids have to see me crying all the time. I feel so guilty for exposing them to this. Children shouldn't have to know when their parents are suffering.

Logically, I know that postpartum depression and the lack of sleep are to blame for my poor mental state.

Postpartum depression isn’t just about being depressed. Nobody told me about the anger, the guilt, and the level of anxiety it can cause.

Several times a day intrusive thoughts pop into my head. I constantly think about my baby, my husband, or my other son dying. For now, I have to try my best to focus on the small victories to keep me going. 

If you are reading this, please do not let that get in the way of asking for help. My children have remained in my care both times I have gone through this. The first time I experienced postpartum depression, changing my medication helped within weeks, which gives me hope. I will be okay, it just takes time.

It has now been a few weeks since writing everything before this. I have changed medications, and have been working with a therapist. Eden had her stoma reversed and is doing well. My postpartum depression is improving and my suicidal thoughts have subsided, but I am still struggling with anxiety. 

It feels like torture while it is happening, but it can and WILL get better. Don’t let those horrible thoughts get the best of you. Reach out to family and friends, let people know how you are feeling — and ask for help. That is the first step in getting better. If you are struggling with postpartum depression, you are not alone. I am getting better every day, and as long as you can hold onto hope, you will too. 

If you or someone you know needs support now, call or text 9-8-8.

Interested in sharing your story? The CF Community Blog wants to hear from you.

This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.

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Mental Health
Haley Bond

Haley is a stay-at-home mother of two. Her infant daughter, Eden, was recently diagnosed with CF after getting surgery for meconium ileus. She also has a 3-year-old son and an 11-year-old stepson. She is currently speaking out about her experiences managing postpartum depression and anxiety. You can reach her on Instagram or by email.

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