On having one child

[Evy]

Hi all. I'm sure this topic has been brought up before so I apologize for any redundancy. My husband and I are both unaffected carriers and our daughter, now 16 months, has CF. We have recently decided to be "one and done" for a multitude of reasons, with the weight of our decision being placed on being carriers for CF. I would like to hear from other "one and done" parents as I'd, quite honestly, just like the support. I feel in my gut that it's the best decision for our family but it's difficult when all but 2 of my friends either have 2, are pregnant with their second, or are planning a second.

Thanks in advance for your kindness and support.

Evy

 

[Ratatosk]

We waited until we were older --- mid-30s to have kids. We'd planned to have two; however, after MUCH consideration we decided to stick with one and focus on having time, money and energy to spend on ds. We'd thought about PGD with IVF; however, again decided be best to spend the money on the child we had. Adoption, we really weren't too keen on the potential of having a special needs child as we had a lot on our plates at the time with 3-4 treatments a day, doctors appointments, meds.... Just risking it... Not an option as I've got friends with 2-3 kids wcf. DS has a lot of cousins his age he plays with, he goes to school and daycare and has quite a few friends. It does/did get uncomfortable early on when people would flat out ask when we were going to give ds a brother or sister --- I'd get teary, but basic fact of the matter is that it was best for us, including ds.

 

[Nugget1]

Just One Child

Hi Evy! My husband and I are extremely proud parents of ONE beautiful, blue eyed blond who just happens to have CF. We decided to make our family "just the three of us" for a lot of different reasons. The reason that carried the greatest weight was the fact that I carried the same statistical chance of having a second child with CF. Overall my child is wonderful with limited CF issues, whose to say that a second might not have very bad CF problems? We didn't think that we could have children of our own so imagine my surprise when I found out I was pregnant "naturally" (no medical intervention) just prior to my 39th birthday! I will say I was a little naive when I was tested and found to be a carrier and then my husband too tested as a carrier that we would have a child with CF. I thought I had to wait so long to have her she couldn't possibly have CF!!! As my DO said 25% is no small percentage! Would I prefer that she not have CF of course, but due to my late arrival in this parenthood game there was a chance that she still wouldn't have a sibling even then. My daughter is friendly, bright, happy and extremely stubborn just like Mommy! I in fact enjoy the "luxury" of being a stay at home mom, something I can assure you would not happen with a second child, even one without CF. I will tell you that I find it offensive when people tell me how lucky I am to only have one when she has been ill. Others who have more children ill at the same time but who don't have an underlying medical condition, like CF, are in fact luckier than those of us with one with CF. I am venting here, because this was said to me by someone who should know better. Even common childhood illness could kill our children! You have to make the best decision for YOUR family. We in fact have made the same decision and couldn't be happier.

 

[triples15]

Hi Evy,

My situation is different because I'm the one w/ CF. But I can absolutely relate with your feelings.

Our daughter is 21 months old and the questions about #2 have already started rolling in. Ugh. Every time it is asked it is like a dagger to my heart. Of course in a PERFECT world, we would give our daughter a sibling. I have one brother and one sister and cannot imagine life without them. I feel tremendous guilt over the fact that my daughter will be an only child. When I see her play with her cousins I feel guilty and wish she had what they have (there are 3 of them). Then they go home and it's just us and she doesn't know what to do with herself for a while. When we go to the zoo with them she has an absolute blast, when we take her by herself, she she's not impressed. Ugh. It's those times when I really wish I could give her a brother or sister.

Like Liza, I always thought I'd have 2. But fertility issues held us up with number 1 for over 7 years. And to be boldly honest, having a baby has been harder than I ever imagined. Combine that with my health being not quite what it was, and number 2 is off the table. Also, now I feel that I need to focus all my energy into keeping myself healthy and make sure I live a long life for her. Another baby would once again take time away from my treatments, sleep, rest etc. Things that I'm already lacking with just one!

Also, as Liza said we are focusing on the benefits of having just one. We can focus all of our time, energy, money etc., on her. We don't give a darn if she is spoiled rotten! lol.

In my OPINION you are making the right decision for your family. We had my husband tested for mutations before we tried to have children. Had he been a carrier we would have chosen not to pursue biological children, or tried IVF w/PGD. I am unwilling to bring a child into the world that has a good chance at having CF. That being said, I want to emphasize that I do not judge other parents for the decisions they make regarding growing their own families. It's a super tough decision that each family has to make for themselves.

I'm so sorry you are struggling with this. Just know that there are those of us having the same issues that you can commiserate with whenever you need. I'm hoping the desire (and pressure from others) to have another will ease over time. You are making a very hard, very selfless decision. You are a great mother and your little one is lucky to have you!

Take Care!!

Autumn 32 w/CF

 

[pipersmom]

I'm a one and done Mom also. Before Piper was diagnosed, I always thought I would have more than one child, but when she was diagnosed that changed our mind. There was not mandatory newborn screening in our state when she was born. She was diagnosed because she had pneumonia and a partially collapsed lung. I have never regretted our decision. Having children is an inherently selfish act, people have kids because they want them, not for the child. She has had a hard row to hoe, and I would never put another child through what she's had to go through. I try very hard not to judge people who haven't made the same decision. I know of families with 2, 3, 4 other kids, all with CF, and I just can't imagine it on many levels. Even after my divorce, (when I was still young enough to have more, lol) I always knew if I met someone else, they would have to be tested, and not be a carrier for me to even consider having more kids. Just as I tell my daughter, adoption is a wonderful option, and something I would have definitely considered if the situation arose.

 

[gla]

Good for you! That is also the decision we made. After doing some research, we found that if we did happen to have two children with CF, they could potentially share bacteria that would be harmful to one another. Our child has done very well so far, but there are of course no future guarantees, and siblings can have vastly different experiences of CF. We get a lot of judgment from people who claim that only children will grow up lonely, selfish, or have some other type of problem......but there is really no evidence to support that.

 

[Dowling]

I will chime in although my situation is a little different ! I have 3 children 5,4 and 1( crazy I know) my one year old has CF so we had no idea we were carriers. We had the older two sweat tested just to be sure even though they were newborn screened and the came back good! Rowan is actually quite normal ( no cf issues) so our work load is as low as it can be with 3 kids. God will bless me with the souls that were chosen for me! However many that may be. Rowan was given to me for a reason, because my marriage could handle it, my finances could handle it and my mini van could handle it.
Consider this , one of my good friends has a child with a severe disability and at the age of 6 she asked her mother ( did you not have anymore children because you were afraid they would turn out like me?)

 

[Evy]

Ratatosk: "We'd thought about PGD with IVF; however, again decided be best to spend the money on the child we had."
Yes! We feel the same way. I don't want to spend the money on IVF and then either (a) have multiples or (b) the embryo's not take and it would have all been for nothing. It's so terribly expensive and we can set that money aside for her future medical needs.

Nugget1: I, too, would not be able to stay at home if we had two children, CF or not! It's something that I am not willing to give up at this time in her life; having a single affords me to keep her out of daycare until she's older. Sounds like you and I are in the same boat...with the stubborn little ones!!

Triples15: Thank you so much for sharing and offering a different perspective on the topic. You are so kind to offer those words of encouragement. "I am unwilling to bring a child into the world that has a good chance at having CF" Man, I struggle with that daily. I received a negative on my prenatal screen because I carry a rare genotype. Therefore, Hubby wasn't tested, who is DF508. So imagine our surprise when the pediatrician called to say she had been flagged as a CF carrier!

Pipersmom: "Having children is an inherently selfish act, people have kids because they want them, not for the child. She has had a hard row to hoe, and I would never put another child through what she's had to go through." Wow. Yes. YES!! Thank you. I wrote a dear friend, my longest friend of 20+ years, to tell her that we had decided we were "one and done" and she replied with "I would be so sad not to have another part of my heart out there" What?! I want to have one because life as it is right now is great for our daughter. My choices to have one are based on things that would or would not alter her health and our lifestyle. Knowing what's in store for her, I would struggle deeply with bringing another child into this world that has to go through that.

gla: You truly took the words out of my mouth. The uncertainty of what another child with CF would mean for our family is something I'm not comfortable with. I know that my husband and I can devote our time and resources efficiently to one sick child, but I'm not sure that we could with two, especially with two sick. I have much respect for those families with multiple children who seem to be able to do it all.

Dowling: I'm not sure how your input could be taken as supportive, especially with that last sentence thrown in. Perhaps your opinion on this matter would best be shared elsewhere. Thank you for sharing.


Thanks guys! I shared your responses with my husband and we feel even more uplifted and secure in our decision. You guys rock!! Love this site.

 

[bloggymom]

I am the one with CF. Having more children was out of the question. I was luckily to have the one. We got lots of grief from friends and family for one having one (only child issues). We told people they could have a baby and do the middle of the night feedings for us. Kiddo gets lonely but we try to do fun things as my health allows. We can't do lots of things with friends or family as they are constantly sick.

 

[Nugget1]

Hi Evy! If I had any concern over my daughter being an only I certainly didn't let that drive my choices for her. I did not send her to daycare/nursery school, only took her once a week to the local library for story hour for about two years and this past September she entered kindergarten and had the most successful year that I could have imagined for her. She is polite, happy and by far the friendliest member of our threesome. Everyone at school likes her and her friends abound. Although she has had to miss a couple of the birthday parties that she has been invited to due to being ill, her own birthday party in June was a huge success with 9 of her classmates enjoying her day! The library experience has benefitted her as well in that she reads well beyond her grade level. The librarian is a friend and invites my daughter to read to the other children and my daughter LOVES that everyone claps for her, especially the parents! Because we have been able to focus our attention on just one we don't feel stressed out, even when that means many hours of treatment a day. She is a beautiful gift for which we are truly thankful. Her stubbornness has it's place as well, she told me several weeks back that CF isn't going to kill her not without a serious fight and you know what...? I believe her! I'm glad this forum has benefitted you by simply acknowledging that YOUR choice is right for you. Be well.