NFP And Genetic Disorder
Next week is Natural Family Planning (NFP) Awareness Week. I do not normally write about NFP because I would prefer to keep that aspect of my marriage private, as would my husband. However, based on the emails I’ve been getting, I feel there is a need for an NFP post to be written for parents of children with a genetic condition (like Spinal Muscular Atrophy, Muscular Dystrophy, Cystic Fibrosis or Mitochondrial Disease). Our situation is unique and often overlooked in the NFP conversation: much of the time we choose to keep our struggle to ourselves, feeling alone as we try to make sense of God’s plan for our lives. Â This post is for those families. I know it’s an NFP post, but please, keep your comments civil. I will not hesitate to delete any I deem inappropriate. Â
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When I get emails from readers it is quite often because their child has been diagnosed with a serious medical condition. Many of these parents, like Tony and I, learn the hard way that they’ve passed on a devastating genetic condition. One of the first questions posed in these heartbreaking emails is some version of, “What do we do about future children?” Couples who’d hoped to use their remaining years of fertility to have and raise large families now must contend with the knowledge that they risk passing on a serious medical condition to future children. Tony and I have a 25 percent chance of having a child with SMA with each pregnancy. We managed to have three children without SMA before having two with the condition. I know families whose first two or three children all had SMA, and a neurologist we knew told us of a family with ten children, and the tenth was the only one to have SMA. Every pregnancy is a crap shoot.
The readers who reach out to me usually are as familiar with NFP (and all it’s ways of being practiced) as Tony and I were before Fulton was born. We sort of practiced it, but we were open to having a large family (despite my own health issues) so I never worried about getting too good at it.
However, when you are faced with a child who will require your care for their entire life, require multiple costly surgeries and medical interventions, and who may die quite young, the future of your family planning takes a different turn. And becoming an overnight expert at NFP while learning all the ins and outs of your child’s diagnosis is difficult and not always successful (Hello Teddy!).
And so these women write to me, overwhelmed and often spiritually strained. Trying to delay pregnancy seems like one more cross, but bringing another potentially disabled child into the mix right now seems impossible. Unfortunately, if you turn to the internet for help or advice you’ll run across a ton of “knowledgeable Catholics” who are all too eager to tell you what to do, and the state of your soul (or marriage) if you do otherwise, when they themselves have absolutely no idea what it’s like to be in this situation. You simply can’t practice NFP “right enough” for any of them. Your mindset is either too contraceptive, reflects too little faith, is too reckless, is bad for your marriage and your spouse, or disregards the needs of your other children.
I’m writing this post today because I want parents of children with a genetic disease to know that the NFP debate online is too simplified, often offensive and usually doesn’t apply to them. If you’ve emailed me, this post may sound familiar. If you haven’t emailed me but wanted to, this is what I would tell you.
First, I know that right now you’re overwhelmed. You’re quite possibly angry with God or feeling hopeless and despairing. You are grieving the death of the life you imagined for your family and your child. You are spending all your time at doctor’s appointments, subjecting your child to a battery of tests and possibly hospital stays. If you have other children, you feel guilty about the time you’re away from them. Time alone with your husband will be at a premium and you may be hard pressed to spend it together joyfully without dwelling on your child’s condition. The future seems dark, unknown and uncertain, and frankly, you might not be able to think about it without becoming upset.
Going forward, you know any future children you conceive could have the same genetic condition. That might mean a shorter lifetime that requires full-time caregiving or, a child that dies shortly after birth.
You’ve probably been presented with two options:
Just contracept! You’ve got so much on your plate! God would surely make an exception for your family. Or get your tubes tied! You wouldn’t want to bring another suffering, disabled child into the world anyway.
Or
Just trust God! He won’t give you more than you can handle! And besides if you learn [prefered method of NFP] you can have lots of sex with no babies! It’s 99.999999% accurate! And if you get pregnant, it’s because you were doing something wrong but that’s okay because every baby is a blessing! And I’m sure your next baby won’t have the same condition! But don’t try abstaining for too long because that’s bad for your marriage; it’s like the worst thing ever for you and especially your husband so don’t ever do that!!!
I don’t give either option in my responses, instead I write of prudence.
Prudence is the virtue that disposes practical reason to discern our true good in every circumstance and to choose the right means of achieving it…  It is prudence that immediately guides the judgement of conscience. The prudent man determines and directs his conduct in accordance with this judgement. With this virtue we apply moral principles to particular cases without error and overcome doubts about the good to achieve and the evil to avoid. -CCC 1806
In a nutshell:
Prudence is the first of the cardinal virtues because it is the ability to look at a concrete situation and know what ought to be done. It is the ability to make right judgments. Prudence gives us the knowledge of what must be done, when it must be done, and how it must be done. – Source
If a couple decides to postpone a pregnancy due to grave circumstances, they are allowed by the Church to use NFP. If they do not know how to practice NFP, they will probably need to abstain for long stretches of time until they either discern they are ready for another child or are sufficiently comfortable in practicing NFP. All these steps require the exercise of prudence, and surprisingly, not the input of anyone else outside the marriage, except perhaps a trusted priest.
It is not prudent to use contraception because it will put the married couple in a state of mortal sin. In such a state, it will be hard to properly exercise prudence in other aspects of your life. If prudence in family planning requires long periods of abstinence, your marriage will survive it, even if it seems like an unfair cross tacked on top of an already difficult situation. If both spouses are in agreement, you will get the graces you need to persevere and be strengthened in this situation. And if you fail by choosing to use contraception for a time, get to confession and try again. You can always choose to do the right thing even if  fear  previously pushed you to do something you knew was wrong, but seemed easier than the alternative.
People may argue that if  you abstain or avoid pregnancy for too long, it’s selfishness, not prudence. However, it is not prudent to engage in sex whenever you want because giving into lust is easier then carefully weighing the implications of another pregnancy on your family. If you’re telling me you need to keep having babies because you and your husband can’t keep your hands off each other, genetic conditions and health problems be damned, you’re not practicing prudence.
Failure to deliberate is called rashness or thoughtlessness. This is when someone just rushes headlong into everything, without ever taking a moment to think it over. It is very dangerous to “act without thinking,” to not consider carefully enough before action. It may work in a Star Wars universe (don’t think; just trust your feelings, Luke!), but in the real world it’s deadly. If you don’t reflect on your decisions beforehand, you will make really stupid decisions. Look at the options, seek advice, pray to God for His guidance, reflect, and take a reasonable amount of time before you act. -Source
People who think long periods of abstinence are an unreasonable burden on a husband reveal that they believe men cannot be expected to choose the good of their families over their own lust. You’re also presuming that abstinence is a greater cross than parenting, or burying, a child with a genetic condition. Perhaps if they would experience sitting in a hospital next to their sick child, or losing sleep night after night due to emergencies and medical interventions, they would understand how easy it is some months to abstain from the marital act rather than risk another pregnancy. Â
However, there is hope. You will get better at practicing NFP as every month you exercise prudence in whether or not you can be open to life. Eventually, you may feel ready to welcome another baby, even with the increased risk. The fear you have now will go away, you’ll settle into a new normal and after awhile realize that another child, even with a serious medical condition, would be a blessing to your family, and the world. Over time God will work in your heart if you let Him. Your trust in God and your own abilities as a caretaker and mother will grow. You’ll come to believe again that God can bring good from all situations, and that His plan, even when you don’t understand it, will make you and your family stronger in ways you can’t imagine now.  Don’t be pressured by other families in similar situations who seem to rush out and get pregnant again. It’s not a contest and you’re no more a sinner, and they’re no more saints, because of their decision. Don’t question your own faithfulness, just work as hard as you’re able. Pray, ask others to pray for you, receive the Sacraments, go to Adoration, and consult with a priest. Our Catholic faith is robust enough to help us through the toughest times. Even when you’re angry and don’t believe that, push through the feeling of abandonment, do what the Church prescribes and in time you will reach a place where you can act, not from fear, but from a place of peace, trust and hope.
Thanks for sticking it out to the end. Drop a civil comment below or link up your post. Don’t forget to include a link back to this post so your readers can find the rest of the Quick Takes (of which this was not one). I look forward to reading your posts!
UPDATE: You can hear me speak about this post on The Jennifer Fulwiler Show podcast, available HERE.
Thank you for this. We’re not sure what role genetics play in our daughter’s chronic illness, but it still puts us in a similar position. Your frank and honest thoughts about such a personal topic are appreciated. It’s tough to be thought crazy by both the “God-will-provide-so-keep-on-keepin’-on” AND the “obviously-you-are-the-primo-reason-sterilization-was-invented” crowds. It’s just not that simple…
No profound comments to add except really, really well said, Kelly. Well done.
You offer some really good things to think about. I especially like this, “Our Catholic faith is robust enough to help us through the toughest times. Even when you’re angry and don’t believe that, push through the feeling of abandonment, do what the Church prescribes and in time you will reach a place where you can act, not from fear, but from a place of peace, trust and hope.” That’s true in a LOT of difficult situations.
Thank you! You always give sound moral advice. I really admire you and your beautiful family. I stopped bothering to practice NFP a long time ago because no pregnancies were occuring. We still have no children after 9 years, and doctors certainly do give strange advice.
Excellent! We also have a genetic condition that can be passed on. It was discovered in our youngest (who was born while our 4th child was battling cancer). So often the thought is “clearly these teachings aren’t for us, our life is too hard!” but we are sometimes called to do hard things. We have practiced NFP successfully for almost 5 years now, under the guidance of our priest and the Holy Spirit. It’s not always easy, but who said following Christ was easy? 🙂 Thanks for this window into a very private part of your life.
Thank you SO much for this! I’m not a mom of children with any genetic disorders, but I sometimes do face fear of pregnancy because I lost a sister to a heart defect. The “What if” of potential death of a child is a huge cross to bear on its own, let alone with the messiness of sex and NFP tied into it.
I do have a question. You said: If both spouses are in agreement, you will get the graces you need to persevere and be strengthened in this situation. And if you fail by choosing to use contraception for a time, get to confession and try again. You can always choose to do the right thing even if fear previously pushed you to do something you knew was wrong, but seemed easier than the alternative.
What if both spouses are NOT in agreement? I know many friends who are willing to bear the crosses of NFP and be open to the graces that will come, but their spouses are adamantly for contraception and sometimes not even open to the faith or God at all. What would your advice be to someone in this sort of “mixed” marriage?
I’d love to know more about this conflict too. NFP week is always silent on the subject.
Ditto!
NFP is silent on a lot of things. First, those who promote NFP, including the Church, need to STOP sugarcoating it, and stop being deceptive. Contrary to how it is touted, NFP is NOT easy, and the “3-4 days/month” that we are told that require abstinence is a downright fallacy. For those of us who adhered to the standard days method, couples are looking at closer to three (!) weeks of abstention PER MONTH. While Phase I does not require abstinence, for obvious reasons, many couples do not find this to be a particularly good time (but, of course, add Phase I and several days of non-abstinence are added, in spite of the “yuck” factor). With all due respect, women are most interested in intimacy during peak fertility (Phase 2). Unless the couple is interested in pregnancy, however, women will forego intimacy during most, if not all, of this period throughout their fertile lives. And yet we’re told that intimacy and communication is greatly improved and enhanced because of NFP. Huh? (Try asking people who use it). Secondly, there is little, if any, support for NFP. I’m not speaking of someone helping with reading a difficult chart. I’m speaking of the reality of month after month of weeks of constant abstention per cycle (which is the REALITY of what NFP is), and just having a SUPPORT GROUP to speak with others of the difficulty. Perhaps there are no actual support groups for it because that may speak to the fact of the actual difficulty of it. Finally, with the availability of apps, certainly something can be done to take the guesswork out of the fertile period. We are told of the “supposed” short period of abstention required each month, but then we learn of the NFP rules (http://nfpandmore.org/wordpress/?p=24) . I have a master’s degree and am well-educated, yet the “rules” to figure this out are nothing short of bizarre, and anything but simplified. Help take the guesswork out of this. We are told that anything worth it is worth suffering for, but it’s clear that NFP has built-in suffering. If organizations such as NaPro Technology can help with better pinpointing when a woman can get pregnant, then WHY can’t the Church put more money into using the same research in reverse for women who don’t want to play Russian Roulette during the women’s fertile period and simply want to know WHEN actual fertility is occurring without adhering to a number of confusing rules? I have recently noticed apps online (http://www.huffingtonpost.com/2015/01/15/contraceptive-app-natural-cycles_n_6472642.html)
helping to pinpoint women’s fertility, and taking the guesswork out of the bizarre rules above, definitely taking the guesswork out of it for women. WHY wasn’t the Church at the forefront of this? Life is hard enough. There will always be required abstinence with NFP, and couples who follow Church teaching will accept pregnancies even when unexpected. But the current “built-in” suffering aspect of it is unnecessary, and with the current technology of apps it is totally unneeded. Although this post is long, NFP needs to be accurately represented, actual support groups need to be established where there are none, and application greatly needs to be simplified so that current required days of abstinence can be shortened. The suffering required with NFP is extremely difficult on marriages. Perhaps with the aforementioned changes, there would be more compliance on the part of couples in the Church to follow the strains of NFP than the current 3-5% who are on board with this teaching (and some of those very begrudgingly so). There’s a reason why so few Catholic couples follow this teaching. It doesn’t need to be like this. NFP desperately needs to come into the 21st century.
This is the best NFP post EVER! Thank you, thank you, thank you!
Thank you for writing this! It’s an experience I cannot speak to firsthand, so it’s immensely helpful to have people like you willing to share your story.
“You’re also presuming that abstinence is a greater cross than parenting, or burying, a child with a genetic condition.”
Thank you for spotlighting that piece so clearly. I really struggle with abstinence (for my husband’s sake more than mine) but had never looked at it in this broader scope.
Oh Kelly, this perspective is so needed and you laid it out so well. We have four healthy children, with the youngest being 20 months old. But I (and my husband too) have been so very very overwhelmed since the baby’s birth, and it seems to be getting harder not easier. We are coming back up on the time where conception will be possible and I have been so stressed about what to do. This is compacted by the fact that I really do want more children, just not at this point where everything already feels so hard. We have never really practiced NFP, just taken what we got but we also have never been in the mental situation that we are now. Your post really and truly gave me some much needed clarity, especially regarding prudence vs rashness. I know I was not your target audience, but seriously this was so good and such a much needed perspective vs the “NFP is only for the weak” perspective that sometimes seems to crop up online. Thank you, thank you, thank you!
Wow – what an incredible piece. Thank you for sharing, I know it will stay in my mind and heart for a long time!
So we’ll written, Kelly!
We have 6 boys in 7 years and 2 have mitochondrial disease. Thank you for this!
Since we saw you last at mass in south bend last year, we have had another baby. Even though he seems completely healthy, the appointments and tests they want him to go through just to make sure are draining.
One thing I don’t think other parents with typical kids don’t realize is that nothing is simple with even my healthy kids. A cough makes me panic that respiratory distress is coming, vomiting puts me into medical mode checking blood sugar, ketones, etc.
My phone cut out…
But my point being that even healthy kids are harder when genetic disorders are involved.
Seems like this is a good way to approach NFP in general. Thanks for writing it.
From a CF Mom ~ yes, thank you, raising my morning coffee to you and yours with affection and a prayer.
“If both spouses are in agreement, you will get the graces you need to persevere and be strengthened in this situation.” – I certainly agree with you!
Thank you for writing this! I really dislike the online judgy debates about NFP.. it is so personal and specific to God’s plan for each marriage. I am so grateful for NFP and fornposts like this!
My three siblings all have a genetic disorder called Fragile X; my mom was a carrier and unknowingly passed it on to my siblings before the disorder itself was even recognized in the medical world (mid-70s). I am actually the youngest of the four of us, and I am not a carrier, which I’ve known since I was very young. My parents are truly the best people I know, but this has been very difficult for them in so many ways. Their 42nd wedding anniversary is coming up in November.
I asked my mom one time if they would have done anything differently knowing that she was a carrier, and she said she just couldn’t answer that, and that in some ways not knowing was a blessing. I probably would not exist if they had known.
Thank you so much for sharing so much wisdom about this incredibly difficult area, and many blessings to you, your husband, and your beautiful family.
This was a really good post. We are not in this position, but we have had times where it was medically necessary to abstain or use NFP for a while. I agree, that when you are facing something serious enough to make it necessary, it’s not nearly so hard to do as you might think before you face that situation. I remember a while back you recommended that everyone should learn NFP because you will not want to be in the position of having to learn it once you really need it – you’ll wish you knew it already. I’ve passed that along to several younger friends. Not that we shouldn’t be optimistic, but you just never know what difficulties you may face. NFP is a good tool to have. It’s also helpful for dealing with infertility.
Excellent view thru the lens of Prudence. Perfectly applies to my Chronically Ill condition and how we planned our family balanced with keeping me alive. It’s tough being 2% of American Catholics that follow our teachings on contraception. Thank you for eloquently sharing
One of the hardest trials within NFP is finding yourself having to use it out of prudence, when you do want another child. I have four living children, and have lost six. My oldest living child has autism, which was detected when my second oldest living child was a baby. She was my third pregnancy. Thus, we have conceived seven times, knowing that we could have another autistic child. In addition, our third living child had some developmental delays that needed a lot of attention to be overcome. Thus, our living children have been spaced further apart out of prudence than we would have ideally liked them to be before faced with this situation, and also out of miscarriage. My oldest living child is going on six years old. We have been pregnant three times in the last year and a half, and lost all three pregnancies. The most recent was last month and we lost her in the second trimester. That was my second experience with late term miscarriage.
I am now faced with the situation of being ready for and wanting with all of my being to carry a fifth living child to term and knowing that due to my age and unknown factors that it isn’t likely to happen. I could keep trying, but prudence says that it is time to stop, at least for now.
I cannot even begin to describe how heartbreaking it is to make that decision. We need to do a better job in the NFP community in being honest that the Lord has different plans for different families, and some families are not going to be called to have babies every two years with minimal NFP use, EVEN if the parents would love to have that call.
Thanks for this post. So many people are willing to judge for the others. God bless you.
Well before I had met my husband I wanted a large family, like the one I came from. But the man who I fell in love with and makes me the happiest also has a GD called Neurofibromatosis, tumors grow on nerve ends both above and below the skin, chances of cancer, going blind, deaf or losing a limb are possible among many other symptoms. This wasn’t something he shared to quickly and I was too in love to care up into the point we got pregnant with our first. 50/50 chance of it being passed on and our daughter has it, cafe au lait spots and a larger head confirmed it at birth. Our second child is the good 50% as of now. Definitely puts you in a different state of mind going forward in life and NFP.
Thank you so much for posting this. We’ve been in the process of discovering some neurodiversity in half our kids which has led to spacing out children differently than originally envisioned. We’ve had periods of looooong abstinence due to anxiety and a couple different traumas I’ve experienced but we’re still persevering. Prudence is really what it’s about, and we HAVE to give other couples practicing NFPnthe benefit of the doubt, trusting that this isn’t something they are doing for the fun of it.
Yes. Yes. Yes.
And thank you.
I also am a carrier for a terminal genetic disease with a 25% chance of passing it on. And, I’m a carrier for *another* genetic disease (the 2nd one is not terminal, but is reasonably serious, and also has a 25% chance of being passed on). So far, we’ve had 2 high risk pregnancies with complicated births resulting in 2 beautiful children with perfect genes (not even carriers!). But, the risks weigh heavily on us as we consider adding to our family. Thank you for sharing your perspective. It’s so comforting to know others in the same boat.
This is just beautiful. Absolutely beautiful.
My wife showed me this. I hit this sentence…
“People who think long periods of abstinence are an unreasonable burden on a husband reveal that they believe men cannot be expected to choose the good of their families over their own lust.”
…and told her that was my favorite part. She said “That’s the sentence that made me think, ‘Stephen would love this.'” She’s right.
I see lots of women opine on the importance of keeping their husbands satisfied. They will tell you, even if not in so many words, that it’s important to have sex with your husband because if you don’t then he will cheat and it will be Your Fault, because husbands are Wisely Made By God the Creator to Need Sex. I really have no idea who came up with this, but you could hardly engineer a better insult to men. According to these women, we are so consumed by our own sex drive that we cannot possibly be expected to deny ourselves sex for a greater purpose. They think they’re helping, but they’re not. It’s the same as insisting that a perfectly healthy person NEEDS their wheelchair, instead of demanding that they get up and walk on their own.
Thanks, Steve. Have you ever considered writing an article as an encouragement to men and to help we women understand things with more clarity? 🙂
I really enjoyed reading this Kelly. It doesn’t pertain to my situation (as we do not have children with genetic disorders) but as a cradle Catholic one of my biggest pet peeves is the notion I hear from Catholics (only online and mostly converts) is that if you practice NFP and chose to not have children you are sinning. Coming from a long line of Catholics this was never taught as true. Using NFP is more then just having kids or not. It’s about being responsible in choices for your family. Anyway, I think you covered it perfectly and I really admire your strong faith in approach to this.
Thank you! You have eloquently put into words what has been rolling around in my brain ever since two of my children were recently diagnosed with a rare, degenerative, genetic disease. Being “done” having children was not our plan, but currently the prudent choice for our family is to avoid pregnancy indefinitely. I am so thankful that we learned NFP before we were married. Although we have never been terribly strict in our use to space babies a bit, we are not “starting from scratch” now, in a time of stress, but have years of charting and knowledge of my cycles as a foundation for our new, strict usage. I appreciate your willingness to talk about this subject, it is definitely a perspective that is missing from the NFP dialogue.
Wow this was amazing.
This was a really beautiful post and I can’t imagine the struggle that couples in this situation must feel. I did want to comment on a minor point; you mention “grave circumstances”:
“If a couple decides to postpone a pregnancy due to grave circumstances, they are allowed by the Church to use NFP.”
I think it is important to note that “grave” is a mistranslation of Humane Vitae found in the Pauline edition that is too often used in discussions of NFP. The Vatican translation of HV uses “serious” and you find the word “just” in the Catechism. Here’s a good commentary on the issue: http://www.hprweb.com/2008/03/humanae-vitae-grave-motives-to-use-a-good-translation/
The term “grave” circumstances gives off a much more desperate connotation than serious and just and I think it can obscure the Church’s teaching for couples trying to discern responsible parenthood.
This is so encouraging! Hope is my favorite virtue. Whenever I am asked to pray for people going through a tough situation of any kind, I always ask God to grant them hope. It’s the best.
God bless you x1000. Excellent, thoughtful words. When leaders in the Church talk about “accompaniment,” what you are doing right here is the prime example.
Thank you so much for a beautiful, personal, and heartfelt article.
I wanted to offer, as an NFP instructor, that generally there are only a couple of weeks of abstinence to initially learn NFP, and then we can start interpreting the signs right away. While a couple may not be proficient at understanding things perfectly from the start, the instructor is expecting to go over every chart for a while with them. This means, they will have confirmation of infertile times very quickly.
Every woman’s body is different, so the possibility of hormonal imbalances throwing things off or challenging post-partum charts are very real. Yes, these situations will call for prayer, patience, support, and possibly referrals.
But, I just wanted to offer that people completely new to NFP need not assume they will spend months in abstinence to start. God bless you and your readers. You have my prayers.
This was excellent. Having a child with autism, I totally get it. I am also an NFP/Billings Ovulation Method instructor for our diocese. Very good perspective as to use NFP wisely. I have noticed that some people feel they MUST have as many children as possible, or they are failures. On the other hand, there are many who cannot have more, for so many reasons. I try to always tell couples, that there is no rule as to how many children they must have. They must be ready physically, financially, mentally, and spiritually. I especially like that you brought up the virtue of Prudence. Seems to be one of the least virtues talked about, yet as important as all the others. Thank you for your writing.
This is a really excellent post. I could relate to it in that there are times it’s really hard to hang onto the teachings of our church but hanging on anyway. In my own case it was infertility. Thank you for speaking from your heart about your own experiences:)
I can’t believe I’m just seeing this now!! This was the article that needed to be written. Thank you, thank you for posting this!! It’s such an impossibly isolating thing, to already struggle to find NFP friends to relate to, and then to try to find someone to talk to someone about a genetic disease that you can pass on who understands the faith and the position that it puts you in.
I agree with you that it does get easier. There IS more peace and more hope as time goes by. You encouragement is so welcomed.
Good luck this Friday!!!!