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Living Life with Cystic Fibrosis “and” Being a Parent

TigersPosted by Summer Katz, M.A., LMHC

Patient Advocate

Spring is in the air, and we can see the flowers in full bloom. The squirrels and the frogs are coming back out, enjoying the beautiful weather. And, the birds and the bees are doin’ their thing too. Making the segue from nature to nurture, I wanted to discuss a topic that is becoming more and more prevalent in the cystic fibrosis community: having cf and being/becoming a parent. As much as I want to add to and highlight this area of living with cf, I personally am not a parent and cannot solely contribute. So, I decided to reach out to a handful of people in the cf community to ask about their experiences. I am thrilled to incorporate the responses from each participant. On behalf of the readers, I thank each of you for sharing a piece of your story. I have to offer a small disclaimer to say that the responses I received were so open and thorough, and for the purposes of this blog, original responses have been minimally edited for content and flow. Thank you for your candidness and willingness to offer your insight to readers! Please enjoy the unrelated images provided throughout the blog, as they merely represent the beautiful and instinctual connections of animal relationships in nature. 


Swans

Sheryl

How old are you currently? Please identify your CF/transplant/CFRD diagnosis.

I am 46. I have cystic fibrosis, 22 years post double-lung transplant, and cystic fibrosis related diabetes (CFRD).

Can you talk about when you first decided to have children? How old were you when you had your children?

I was about 6 years post transplant and doing well when my healthcare teams supported my decision to have kids if that was my desire (30 years old). I had close monitoring and communication with my medical teams throughout both pregnancies. I had my first child at 31 and my second at 36.

Were there any pregnancy/adoption complications (or anything about bringing a child into the world that you’d like to share with the readers)?

Once I received support from my health care teams, my husband had genetic testing to make sure he was not a CF carrier. We would have looked into different options if he was. He was not a carrier so we proceeded naturally.

My pregnancies went pretty smoothly. Aside from kidney concerns, all was good. I was induced at 35 weeks with my first child. I was spilling protein and my blood pressure was increasing. My oldest was born at 35 weeks, 4lb 3oz. He was healthy and came home with us 3-4 days later. With my second child, I had a planned c-section at 37 weeks. They didn’t want me to go to term again because of my kidneys. She was 5 lb 2 oz and healthy. She came home with us 3-4 days later. She was free floating at time of delivery which was the reason for the cesarean.  I had many major surgeries prior to the c-section, but found recovery following this particular surgery to be difficult.

What are the current ages of your children?

15 years and 10 years

How do you manage ‘life with CF’ with being a parent?

My kids have not known a day without their mom taking meds. And they have known many days, even months and years filled with various medical requirements. It is their normal. Just because it’s normal though, doesn’t change the anxiety of having to tell them when I’m going to be admitted to the hospital. That is not fun.

They still expect everything from me. “Make my lunch; I need to go here, I need to go there; I need help with this,” etc. My parents expected me to live a normal life within all of my medical needs. And now in addition to my needs, I have my kids expecting the same thing. I wouldn’t want it any different.

I have days when I feel well, others not so well, regardless of how I feel, my kids have me up and going everyday. I might feel like staying in bed but it’s really not an option. There have been some very sick days where I get up, get them off to school and go straight back to bed.

For the most part though, I feel like a ‘normal’ Mom. Albeit, normal with close to 50 pills/meds a day, daily shots, doctor visits routinely, often daily IV’s, naps, hospitalizations, etc.

I live for the normal part…volunteering at school, chaperoning, attending concerts, dances, gymnastics, regattas, carpooling, helping with homework, making dinner, cleaning the house, etc.

Can you share a little bit about how your children impact your CF? How do your children support you in managing your CF?

Everyday my kids wear me out AND keep me going. I feel having CF helps provide an understanding of appreciating the moment, and at the risk of sounding cliché, an appreciation of the little things in life. Deep in my heart and soul I appreciate everyday and (most) everything with my family, I get stressed and overwhelmed with girl drama; cups piling up in a room; stuff all over our house, etc. I talk to other moms; they feel it too, and they too are worn out. I can relate to issues and joys that are not health related.

So today, I made breakfasts, school lunches, phone meeting with a vice principal, 1-hour IV, many meds, sinus irrigations and am about to head out to get my kids. Later we have gymnastics and a concert. In the meantime, I sent an email to my transplant coordinator explaining that I have an increase in my cough which could lead to many days, weeks, and even months of testing and treatment. Tonight, I will lay down worn out, and in the morning, universe willing, I will wake up and keep going.


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Andrew

How old are you currently? Please identify your CF/transplant/CFRD diagnosis.

I am 46. I was diagnosed at birth with cystic fibrosis due to w/ meconium ileus, 8 years post double-lung transplant (after one dry run).

Can you talk about when you first decided to have children? How old were you when you had your children?

As a male with cystic fibrosis, it is very difficult to conceive naturally due to sterility. My wife went through 10 cycles of IVF to conceive our first child. I had two procedures to collect sperm, one sperm aspiration and another procedure that I don’t recall the name of. Our second child was conceived after one sperm insemination. I was 34 when we had our first child, and our second at 42.

What are the current ages of your children?

11 years and 3 years

How do you manage ‘life with CF’ with being a parent?

It’s a juggling act. A normal marriage requires give and take. Raising kids takes sacrifice. Being in a long-term marriage (20 years for us), and raising 2 kids (8 years apart) takes a lot of sacrifice, understanding and unconditional love. Your vows are tested every day simply because of the heath challenges posed each and every day: from quarantine when the kids bring home a bug from school; to getting more rest; to all hell breaking loose when I do go in the hospital. When that happens, my wife is left to manage the juggle of being an advocate for me and taking care of the kids and everything at home.

Can you share a little bit about how your children impact your CF? How do your children support you in managing your CF?

They are exhausting … in a wonderful, fulfilling way. Health-wise, some days are good, some are bad. You learn to appreciate the good ones and do as much as you can with them on those days.

Can you share anything in particular about having CF and being a parent that could be important/beneficial/positive or negative to share with the readers?

I recommend that you have your eggs harvested or sperm collected prior to transplant because the effects of post-transplant meds is unknown. Out of caution, the presumption is that they are harmful to one’s DNA / reproductive cells.


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Jessica

How old are you currently? Please identify your CF/transplant/CFRD diagnosis.

I am 38. I was diagnosed with CF at 2 years old (Delta F508 mutation), double-lung transplant at 37 years old.

Can you talk about when you first decided to have children? How old were you when you had your children?

I was 23 years old when I had my son. I was 22 years old when I found out that I was pregnant, and it was the shock of my life! I grew up believing that I wasn’t able to have children, and if there were ever a time when I wanted to actively pursue it, it would be extremely difficult to get pregnant with CF. When I was born, the life expectancy of someone with CF was around 12 years old. It continued to increase as I got older, but CFers living into adulthood was not a common occurrence. So, there was never any discussion of family planning or anything like that at the time. I had been on birth control and when I found out I was pregnant, my husband and family were in complete shock. We all were shocked and terrified. We didn’t know how my health would be effected (my lung function [percentage] at the time was in the high 50’s and I had good weight on me, so overall, I was pretty stable but needed a course of IV antibiotics 1-2 times a year). We did not do genetic testing to confirm whether my husband was a carrier, and we decided that we were going to have the baby no matter what. I wondered what my treatment would look like over the next 9 months (i.e. what medications I could continue to take to manage my health; which ones would I stop because they could harm the baby). I also had the typical fears and concerns that healthy couples deal with. We were young and still in college without a solid career or finances, etc.

While I had never wanted children (again, I think it was just something that I had accepted was not in the cards for me, and I was okay with that), I believed in my heart that this baby had done everything it could to get here, so no matter the risks, I was willing to take them. Once I made that decision, my family supported me and consciously decided to go forward looking at it and celebrating it as the true blessing that it was. But, like for any couple, it was completely life altering. We had to grow up over night and every decision we made became about our future and what was best for the baby.

Were there any pregnancy/adoption complications (or anything about bringing a child into the world that you’d like to share with the readers)?

I remained relatively healthy during my pregnancy. I had to go to a high risk OB, and had to stop some of the inhaled and oral antibiotics that I took on a regular basis because many possible side effects (if any) on the fetus were unknown. At one point, I did have to be hospitalized for IV antibiotics, and while I was admitted, they also administered a shot to help my baby’s lungs develop a little quicker so he would be a little more stable if he had to come early. But, overall, I felt really good and loved being pregnant. I was extremely nervous about making sure I was able to give him everything he needed, and the doctors explained to me that they were not concerned with the baby. Doctors said, “The baby was like a parasite and would take whatever it needed from me”; so they had to make sure I was able to absorb enough vitamins and calcium, etc. to keep me healthy. Towards the end of my pregnancy, I was on oxygen because the baby wasn’t able to get enough from me. He was taking up so much room, that it was tough to breathe. They induced me a month early because, even with the O2, they were concerned he wasn’t getting enough, especially if he were to get much bigger. I delivered naturally and had a pretty smooth birthing experience. They tested the cord blood to see if he had CF, but he was only a carrier. He was only 5 lbs 13 oz, and was jaundice, but overall, healthy. So we were so happy and thankful.

After he was born, my health did decline. My lung function [percentage] dropped to low 50s/high 40s and I wasn’t ever really able to get it back. I think some of the toughest ways he affected my health was not during pregnancy, but as an infant. You don’t think about it at the time, but babies are a lot of work with little sleep. And it can take a toll on you mentally and physically. He was colicky for the first 3 months and did not sleep at all. It was really tough. Also, there are many meds you can’t take while breastfeeding. However, I was only able to breast feed the first couple of weeks. I needed to go on IV antibiotics, and they had terrible side effects for the baby. I was devastated!! You read all the books about how important it is to breastfeed and how it has all the nutrients your baby needs, and I already felt like I was failing and couldn’t provide for him. That was the first time of many, that CF would cause me feelings of inadequacy as a parent. So, I had to switch him to formula, and you know what? He’s fine. He’s a giant teenager who is very healthy and smart, so his brain and body developed just fine! Over the years, I also learned that it’s okay to do things your own way and not “by the book.” You have to do what works best for you and your baby/family, and everything will be fine. Kids are resilient. Thank goodness.

One thing that did surprise me, was after he was born, was really one of the main times in my life that I really dealt with my own mortality. I remember comparing the current life expectancy for CF (which I never even cared about before) to how old he would be at that time. Like, well, that would only be when he is 6 years old. That’s not enough time. Or, well, if I die when he’s young then maybe it won’t be as hard for him. But would he remember me? I just remember how hard it was for me when my brother passed away from CF when I was in high school. It changed me. It was very hard on me for years and I did not deal with it in a healthy way. And that was just my brother. I couldn’t imagine what it would be like to lose a parent so young. I just always thought that he has this innocence and light that shines through his eyes when he smiles. And if something happened to me, that light would go away. And he’d never get it back. That thought was devastating to me. I would tell myself and my husband, if I could just live to see him graduate high school, then maybe he’d be better equipped to handle it. I know no one is ever really “ready” to handle that kind of loss, but for some strange reason it seemed to give me something to work towards and some false peace that it would be better than if something happened to me sooner.

What is the current age of your child?

15 years

How do you manage ‘life with CF’ with being a parent?

Well, there’s kind of a couple of different aspects of ‘life with CF’ and parenting. So, there’s managing your treatments and health, while still being the best parent you can be. But, there’s also managing how you discuss your health with your child, and managing their life alongside your CF.

As far as my therapies, etc. go, they were always just a part of my son’s life. Mommy had to do her treatments, or has to go to the doctor to blow in the machine. For years, I don’t think he even realized that not everyone’s mom had to do those things. We always just took an honest, but optimistic approach (which is basically how we viewed CF). He would come see me in the hospital, and watch me do my iv’s at home, it was his normal. Sure, I’d have to get up an hour early to get my treatments done to be able to get him to baseball on time, or have my at-home IV’s hooked up and in my pocket, but it’s all just part of our life. It’s his normal. I never hid it from his friends or his friend’s parents either. I would let the parents know that if their child was spending the night, they would probably see me doing breathing treatments, etc. so if they had any questions, or came home with any questions, this is what it was all about. So, it also became “normal” for his group of friends. ‘Oh yeah, Mrs. Jess has CF and she has to do her treatments.’ As my health declined, and my son was in high school, I remember thinking that being on oxygen would be embarrassing to him. When we went for his school orientation when he was a freshman, I took my O2 off before going inside. He said, “Mom! What are you doing? Put your oxygen back on.” I said, “Well, I thought I would just take it off for a little while. I don’t want to embarrass you in front of your friends.” He said, “you could never embarrass me with that, mom. Put it back on. I don’t care.” He put his arm around me and we walked in together. I remember thinking, wow. With all of our mistakes, we must’ve done a few things right.

It’s always been tough when he would get sick because you’re not supposed to be around them or expose yourself to them, but that was something that I could never comply with. If he was sick and wanted his mom (which they always do), I was there. I took care of him. That’s only recently changed as he’s gotten older and I’m now post-transplant. He’s at the age where he understands how devastating it could be for me and doesn’t want me to get sick, and we are more able to manage separation and limit exposure, etc.

When it was time to talk to him about transplant, again, we just took an honest but optimistic approach. We had always told him, when he would worry about me dying, that I could always get new lungs and then I would get better. As it became a reality and he got older, I think he was around 10 or 11 years old when we first started discussing that if I continued to get sick that I might need to be placed on the list, he viewed it as a positive and was excited about me getting new lungs, so that made it a little easier on us.

Can you share a little bit about how your child impacts your CF? How does your child support you in managing your CF?

One thing I will say is that while it can be physically draining to be a parent sometimes, becoming a mom was probably one of the biggest things in my life to impact my health and how I take care of myself. As I mentioned, when I became pregnant, I was young and at the age where I didn’t really take care of myself. I was still dealing with my brother’s death and was partying a lot. I definitely was not considered a compliant patient. The minute I found out I was pregnant, all of that changed. I wanted to know everything I could do to be in the absolute best health I could and live the longest that I could. There were no more missing treatments or not taking my pills or waiting for awhile after realizing I was getting sick to call my doctor. It wasn’t about me anymore. My mom used to get so upset when I would tell her ‘there was no way I would ever have a lung transplant’. After seeing what my brother went through with his liver transplant, I told her that ‘I didn’t want to ever go through something like that’. My stance was that “I would just enjoy my life and when it was my time to go then I’d be ready.” Well, all that changed with my son. I wasn’t hesitant to get a transplant when it was time, and as hard as it was, I would do it all over again. Even for just one more day of being his mom.

I asked my son how he thought me having CF has impacted him. He said that he ‘feels like he has had to grow up and dealt with some stuff that other kids his age have not.’ He said the toughest thing was transplant. He was really scared and he hated seeing me with all the tubes and machines hooked up to me. He said it’s an image that haunts him.

Can you share anything in particular about having CF and being a parent that could be important/beneficial/positive or negative to share with the readers?

When I was going through transplant it was really tough as a parent. We had a lot of support, so we were lucky to have help, because we didn’t want to alter our son’s life too much. We thought it was important to help keep his routine. Luckily, I got the call when he was on winter break at school, so he didn’t miss any school. But I was in the hospital with complications for months, so I’m sure it was hard for him when he went back to school. I had emailed his teachers so they were aware when I was being placed on the list and to please keep me informed if they had seen any changes in my son’s behavior they felt we should be made aware of. But, it was a tough balance of letting him know what was going on and not scaring him to death. I didn’t want him to see me that way, but we also didn’t want something to happen to me, then he’d never forgive us for him not being there. It hurts my heart that he had to go through any of it; that any of my family did. But my husband just tries to remind me that it will make him a stronger person in the long run and that he’ll be better off having me around than not having me, no matter what he had to go through to have that. As a parent with CF, sometimes I struggle with that. I remember one time I was really struggling after transplant, crying because I felt selfish that I would bring a child into the world knowing I wouldn’t be around to raise him.

It really is the toughest, most rewarding job in the whole world. Becoming a mom was everything I never knew I even wanted. As scary as it can be sometimes, it’s worth it. And, I think having CF only magnifies that. I think CF has given me a different perspective and outlook on life than most people, and that translates into my parenting. I have always had a true appreciation and gratefulness for every minute that I’ve had with him. And I hope to continue to impart that same outlook of appreciation, even for the small things, to my son.

Also, it’s natural to always put your children before yourself, but you have to really focus on doing what’s best for you and your health. It’s tough when you have to miss something because you’re in the hospital or not feeling well, but in the long run, it’s what’s best. And, I’m sure every parent is really hard on themselves; we always feel like we’re failing at some point, but at the end of the day… we need to cut ourselves some slack.


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Alicia

How old are you currently? Please identify your CF/transplant/CFRD diagnosis.

I am 34. I have CF (nonsense genes), not transplanted. I am diagnosed with type 2 diabetes; Polycystic ovary syndrome (PCOS); and Endometriosis.

Can you talk about when you first decided to have children? How old were you when you had your children?

I was 33. Before we attempted to get pregnant I spoke very directly and openly with all my doctors and saw a high risk OB to make sure I was healthy enough for a pregnancy. We also had my husband tested as a carrier; he is not. If the test had been positive as a carrier, we would have gone straight to adoption.

Were there any pregnancy/adoption complications (or anything about bringing a child into the world that you’d like to share with the readers)?

Once we got the ok, we tried to get pregnant naturally for a year with no results. My high risk OBGYN assisted with some oral drugs to assist, they did not work. We did go see an infertility doctor that specializes with cystic fibrosis infertility. Other than endometriosis, no other complications were found to cause the infertility.

My doctor recommended endometriosis surgery, which greatly helped my pain. We did seven intrauterine inseminations (IUI), unsuccessfully. We had two more to go, but I needed a break, and that’s when we got pregnant! I’m still extremely shocked that we were able to get pregnant unassisted. I do believe the IUI treatments helped kick-start my reproductive system. Trying to conceive naturally and assisted is extremely taxing, emotionally and financially. It is really important to make sure you and your partner communicate and understand this is an extremely stressful situation. Having supportive friends and family really helps!

What is the current age of your child?

14 months

How do you manage ‘life with CF’ with being a parent?

It can be very difficult some days. Thankfully I have an amazing support system. Between my family and friends, when I really need to rest and take care of my health, there has always been someone that can help with my child. Thankfully my husband‘s company is also very supportive. When I had my first hospitalization after our daughter was born, my husband’s company put together a time-off pool to ensure my husband could stay home with us without fear of losing his job and not having enough PTO. Having a child in general is exhausting, add CF to the mix and it definitely makes things difficult, but making sure that you’re prepped for success and remember that it’s ok for some days to just be slow – helps. I recommend being aware of your limitations. Know when you need a break or time for extra treatments or even a nap! A healthy parent is a happy baby.

Can you share a little bit about how your child impacts your CF? How does your child support you in managing your CF?

At the moment my child is too young to help support or mange my meds but I have a feeling she will be extremely helpful and supportive as she gets older. She already likes to be very involved and is extremely inquisitive. My daughter is very intrigued with my nebs and it can be a bit tough but I’ve found ways to entertain her like giving her a nebulizer of her own “to use” during my treatments. I do find that I am even more proactive with my health so that I can stay healthy for her.

Can you share anything in particular about having CF and being a parent that could be important/beneficial/positive or negative to share with the readers?

The fact that I have CF and that I am a mother and turning 35 this year is extremely surreal. I truly never thought any of this would even be a possibility. I am very lucky that my health has been stable and better then it was 10 years ago! As CFers, we are living in a wonderful time where we are living longer, healthier, more fulfilled lives.

I always wanted two kids; however, after having one I personally believe there is no way I could take care of myself, my child, and our home with a second child. Personally, I have always believed that having a chronic disease and knowing your limitations is a blessing and I don’t view my limitations in a negative way. Being a parent is the most amazing thing I have been able to do. I am extremely lucky.

I would recommend before thinking of adoption or trying to get pregnant speak very openly with your doctors, partner, and family. Make sure you have the support and that your health is stable enough. Being in the hospital, away from your baby is extremely hard and stressful, emotionally and physically.

Parenthood is amazing and I wouldn’t trade it for anything. Just like everything in life it has its ups and downs but as CFers we are prepared to deal with difficult situations.


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Ashley

Please identify your CF/transplant/CFRD diagnosis.

I have CF, post double-lung transplant and am diagnosed with CFRD.

Can you talk about when you first decided to have children? How old were you when you had children?

My husband and I have adopted 3 children. I had just turned 33.

Were there any pregnancy/adoption complications (or anything about bringing a child into the world that you’d like to share with the readers)?

Our adoption process was 3 years in the making, it was very emotional with ups and downs. We stayed focus on our goal and the kids’ best interest, and we finalized adoption April 25, 2017.

What are the current ages of your children?

14 years, 10 years, and 7 years

How do you manage ‘life with CF’ with being a parent?

It becomes harder to focus on my health first. But since transplant, I’ve had to really put my health before anything. If I’m not healthy, the whole house suffers. I’m extremely lucky to have such a supportive husband who picks up the slack when I’m too tired or have to go out of town for doctor appointments. CF, for me, looks different after transplant too. Not as many treatments involved, just a lot of meds.

Can you share a little bit about how your children impact your CF? How do your children support you in managing your CF?

We felt in the beginning it was important to include the kids in my health management. They sit and read me stories while I fill my pill case. Or they support me just by asking questions about my appointments or how I’m feeling. They also became germaphobes too. They know if they are sniffly or not feeling well, mom can only help with so much. That’s the hardest part….not being able to help more when they are sick.

Anything in particular about having CF and being a parent that would be important/beneficial/positive or negative to share with the readers?

So, I mentioned not being able to help when they are sick. Also, kids are very time consuming and energy draining. It takes a good balance of sleep, work, and play. I thank God for my kids because they make me want to fight harder… I had reason before, but even more so now. And I find I take care of myself to make them proud. I want them to know that while mom is sick, she is capable.


 

As you can see, the participants who assisted me in this blog have offered a variety of details about their experiences. For the purposes of maintaining a piece of their anonymity, we have decided to leave out further details about who they are. We hope that the information shared has provided you a sense of normalcy and even relatedness in your own decision and journey of being a parent with cystic fibrosis. If you are interested to share more of a dialogue on this topic or are looking for supportive resources, I welcome you to reach out to me at katzs@hhcs.com.

SKatz - Prof Pic LARGE Use

Summer Katz, M.A., LMHC
Licensed Mental Health Counselor
Cystic Fibrosis Pharmacy Patient Advocate

*Disclaimer: This blog is provided for informational purposes only (including brief topic exploration or reflection) and should not be used as a substitute for professional mental health or medical treatment.

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