Planning for Motherhood: Practical Considerations
In part one of this series, I shared some considerations to take into account before deciding to conceive with cystic fibrosis. Focusing mostly on health, they included: maximizing health status, revamping treatment compliance, and catching up on doctor appointments as important tasks included in planning for my own pregnancy with CF. Now in part two, I’ll share some of the important “big picture” CF considerations to plan for before becoming parents.
Being a parent with CF is a special experience that requires unique thoughtfulness before jumping in. I hope these ideas help your family make the decision of parenthood with confidence and excitement.
Consider carrier testing
Before you begin to conceive, consider talking to your CF care team about CF carrier testing for your partner. Carrier testing is often a simple blood test that looks for CF mutations in our DNA. If your partner is a carrier of a CF mutation, your child has a 50% chance of having CF.1 If your partner is not a carrier, then your child will only be a carrier themselves and will not have CF (they automatically get one mutation from a CF parent).1 Ultimately, knowing the chances of passing down CF to your child, may change the way you choose to have children--biologically or through other methods. Every family should decide what they feel comfortable with.
My husband got tested when we first were married so that we were aware of what our options were. He ended up not being a carrier of the 40 most common mutations. We felt, for our family, that it would suffice enough to continue to conceive on our own.
Be realistic about work
Motherhood is a full-time job on its own. The pay might be different and the coworkers are messier, but it’s a job--and a busy one at that. With CF in the mix, it’s a good idea to think about how working with the addition of parenthood will have an effect on your health. Maybe full-time work isn’t in your best interest but part-time work is feasible? Possibly you work a less physically demanding position during pregnancy or have the ability to work from home postpartum? How will reducing work affect your finances? Everyone is unique, every household budget is different, and every job has different demands. Having discussions with your care team and partner can really help prepare you for deciding what is best for you and your family.
Truthfully, working outside out home while having a young child was one of the hardest things I have ever done--not to say it can’t be done successfully. It depends on what type of work you do, the work environment, the job flexibility, and your overall health at the time. Looking back, I wonder if I could have remained more stable in my health during that time with a different type of job. Take the time to process your work options to keep your health a priority!
Gather your support system
They say it takes a village to raise a child. With CF, the phrase should actually go like this: It takes a village to raise a child, and keep a mother healthy. Pregnancy and parenthood can be physically and mentally draining, especially in the midst of a chronic illness.2 You will need support and help at some point to help keep your health a priority. (Trust me, I am terrible at asking for help, so this advice is coming from personal setbacks.)
Begin to gather your tribe now--the people that will support and offer assistance. It helps to know when going into parenthood that, whatever happens, you have a strong support system to fall back on. In times of sickness, such as hospital admissions or home IVs, having help will make a difference in your recovery.
In addition, every mother needs a break every once in a while to recharge. Usually, my breaks happen to be at solo doctors' appointments--you take what you can get. My family was great at taking unnecessary responsibilities off my plate when I was unwell. They often would make our meals, babysit while I rested, or helped around the house folding laundry or washing dishes. Even little favors like those can make a difference. With a great support system, motherhood is more giving than it is draining, and the most amazing experience.
Are you thinking of becoming a parent with CF? Share your thoughts in the comments below!
Have you (or a loved one) been experiencing any negative side effects from Trikafta?