Experience with NFP for medical reasons?

[ArielRussu]

This is one of the ugliest statements I’ve read on caf.

Why? Have you ever watched videos or know someone personally who had/has the disease? I know a nurse who worked with a little boy who had it from his neck down, he is now deceased (died around age 10), and was bandaged from his neck down 24/7, 7 days a week and she said he was ALWAYS in pain! It is basically living the life equivalent of a chronic burn victim.

If you don’t know what EB is, it is a chronic condition that makes children’s skin blister and fall off, causing chronic wounds that NEVER heal! It is caused by a mutation that blocks the body from producing collagen, which collagen works like glue to keep your skin together and if it is not there it causes the surface of a persons skin to FALL OFF! As a result these children are called butterfly children because there skin is as delicate as a butterfly wings. However, this does not just apply to the skin outside there body, it affects the inside like there esophagus and inside the mouth as well, thus they have difficulty swallowing due to sores in there mouth, thus end up not being able to eat and require a G-tube. So, to protect the children’s blistering and wounded skin they are wrapped in bandages that must be changed daily and the changing is excruciating! Like I said a nurse I know cared for a child with this and she said he would scream his head off telling the nurses too stop and of course they couldn’t.

Here is a description of what life with EB is like:
debra.org/living

I would post pictures but they are very graphic, probably too graphic for this forum.
So here are some links:
media3.s-nbcnews.com/j/streams/2014/August/140806/1D274906512195-today-elisa-mccann-140729-split.today-inline-med.jpg

marlon-wayans.s3.amazonaws.com/mw_videos/butterfly-child-meet2.jpg

ichef.bbci.co.uk/news/640/media/images/65189000/jpg/_65189723_skin_harry.jpg

lh4.googleusercontent.com/-_y0LFpjPKqQ/VEfm2YFXvRI/AAAAAAAAaQs/96F8lv4d88w/w2048-h1536/Epidermolysis%2BBullosa%2BB.jpg

Is this a condition you would wish on a child! and innocent human being? Let alone your worst enemy?

Whats more ugly is someone willing to keep having children after having just one child affected! I mean, out of compassion for your future children just stop! You can’t hug them, you can’t make there pain go away, treatments are out there but they only lessen the disorder and don’t cure it.

As one mother of a child with this disease wrote:
"This disease attacks you physically, emotionally, and financially”

 

[kdbueno]

Have some time for infused contemplation it is a radical way to be one with the Triune God.

 

[kozlosap]

Why? Have you ever watched videos or know someone personally who had/has the disease? I know a nurse who worked with a little boy who had it from his neck down, he is now deceased (died around age 10), and was bandaged from his neck down 24/7, 7 days a week and she said he was ALWAYS in pain! It is basically living the life equivalent of a chronic burn victim.

If you don’t know what EB is, it is a chronic condition that makes children’s skin blister and fall off, causing chronic wounds that NEVER heal! It is caused by a mutation that blocks the body from producing collagen, which collagen works like glue to keep your skin together and if it is not there it causes the surface of a persons skin to FALL OFF! As a result these children are called butterfly children because there skin is as delicate as a butterfly wings. However, this does not just apply to the skin outside there body, it affects the inside like there esophagus and inside the mouth as well, thus they have difficulty swallowing due to sores in there mouth, thus end up not being able to eat and require a G-tube. So, to protect the children’s blistering and wounded skin they are wrapped in bandages that must be changed daily and the changing is excruciating! Like I said a nurse I know cared for a child with this and she said he would scream his head off telling the nurses too stop and of course they couldn’t.

Here is a description of what life with EB is like:
debra.org/living

I would post pictures but they are very graphic, probably too graphic for this forum.
So here are some links:
media3.s-nbcnews.com/j/streams/2014/August/140806/1D274906512195-today-elisa-mccann-140729-split.today-inline-med.jpg

marlon-wayans.s3.amazonaws.com/mw_videos/butterfly-child-meet2.jpg

ichef.bbci.co.uk/news/640/media/images/65189000/jpg/_65189723_skin_harry.jpg

lh4.googleusercontent.com/-_y0LFpjPKqQ/VEfm2YFXvRI/AAAAAAAAaQs/96F8lv4d88w/w2048-h1536/Epidermolysis%2BBullosa%2BB.jpg

Is this a condition you would wish on a child! and innocent human being? Let alone your worst enemy?

Whats more ugly is someone willing to keep having children after having just one child affected! I mean, out of compassion for your future children just stop! You can’t hug them, you can’t make there pain go away, treatments are out there but they only lessen the disorder and don’t cure it.

As one mother of a child with this disease wrote:
"This disease attacks you physically, emotionally, and financially”

BRAVO!

 

[1ke]

Ok well maybe I could have worded it differently. But I believe most people in my situation would have felt the same, especially as I am entering perimenopause and my cycle wasn’t as regular as it used to be. To have 2 sick children is one thing. To have 3, after knowing the risks, is another. To have 2 sick kids and one healthy one, how do you explain that to the sick ones?

I am also in peri-menopause. And sometimes abstinence is necessary for an extended period.

No one is suggesting you have another child.

As I said, I had a hysterectomy a couple of months ago for urgent reasons so it is a non issue.

Ah, that is more clear. Your prior post made it sound like your hysterectomy was to prevent children, not because of a medical problem. Sorry for the misunderstanding.

I mean what do you say to people like us? I wouldn’t have known what to say either.

I would say that you have a serious reason to avoid pregnancy and as a couple that may require a lot of sacrifice during this time of your life.

I was only telling my story so that others can know some of the things we dealt with, and that NFP can work even if it is nerve wracking at times. Perhaps they can avoid those feelings and situations if they know about them ahead of time.

Thank you for sharing your story. It is an inspiration to people who struggle.

 

[AussieGirl19]

The advice about taking a pregnancy test every month is pretty smart. I will be keeping that in mind for friends in the future. I kind of know what you’re going through. My husband and I have been married for 12 years. We have two beautiful children, both of whom were diagnosed with a genetic condition called Fanconi Anemia. It is incurable, and has caused my son to have a bone marrow transplant. Now our daughter is in bone marrow failure. I rarely say this out loud, but we don’t know if we Wil ever have grandchildren, or if our children will die before us. It is an extremely heavy cross for all of us. I was petrified of getting pregnant again, but I can say that both my kids were planned, and NFP did work for us. Before we were catholic we dint know that what we were doing was called NFP, we just knew that bc pills are not good for a woman’s body and didn’t want to have me on them. I won’t lie. Until I had my hysterectomy a couple of months ago, it was always an anxious time leading up to my period, and always a relief when it came. And it wasn’t always easy to abstain, and I will admit to both of us being in the confessional over it more than once. Something that no one tells you is that over time you and your husband kind of sync to one another. When I was ovulating it was like sending out a hormonal beacon to him. We could have done better, but we are not perfect. I tell you this not to discourage, but to arm you with knowledge that could help you avoid that pitfall. I sometimes felt that the church hadn’t considered people like us when the rules were set, and that was another source of frustration and hurt. I will admit that I was angry for a while over it. I know your situation is complex, but it surely could be worse. If switching medication were an option for us we would have had more. Don’t mistake that for me minimizing what you’re going through, it is meant to give you hope. Another thing that struck me is if your boyfriend/fiancee is going to have a serious issue with abstaining for a few days a month then you need to reconsider choosing that person. I think now is the time to find the opportunity to have a serious discussion with your boyfriend about the risks involved and make sure he understands everything very clearly. Talk to your doctor now about the possibility of switching meds should an unexpected pregnancy occur. Knowledge is power. As a side note, please consider getting on the bone marrow registry at marrow.org. A stranger saved my son’s life, and will save my daughter’s. Please keep Gage and Stella in your prayers, and the doctors researching this disease. Thank you.

Thank you for sharing. I can’t imagine what you’re going through. I’ll be praying for you and your family, and will look into getting on the bone marrow registry. God bless you.

 

[csuther]

I am also in peri-menopause. And sometimes abstinence is necessary for an extended period.

No one is suggesting you have another child.

Ah, that is more clear. Your prior post made it sound like your hysterectomy was to prevent children, not because of a medical problem. Sorry for the misunderstanding.

I would say that you have a serious reason to avoid pregnancy and as a couple that may require a lot of sacrifice during this time of your life.

Thank you for sharing your story. It is an inspiration to people who struggle.

I appreciate that. Sometimes it’s hard to fathom why you have to sacrifice more than you already have. That’s when anger can be misplaced, and frustrations can be taken out on the wrong things. Like rules that are increasingly hard to follow. It’s complicated and hard. The hysterectomy was due to dysplasia that was turning into cancer, so it was definitely legit, but I won’t lie and say I’m not relieved. It was starting to become an almost constant source of worry and contention.

 

[AdamP88]

Maybe it was a harsh way to put it. I can say that if we had gone on to have another child knowing what we know now, and if the child had inherited the genes for FA, we would have felt horrible and guilt stricken. My prayers go out to that family. Butterfly syndrome is terrible. At least my kids can play and do normal activities. There is always someone that has it worse than you.

The lives of children with such conditions are equally as valuable and worthy of dignity as the lives of healthy children.

 

[1ke]

Maybe it was a harsh way to put it. I can say that if we had gone on to have another child knowing what we know now, and if the child had inherited the genes for FA, we would have felt horrible and guilt stricken. My prayers go out to that family. Butterfly syndrome is terrible. At least my kids can play and do normal activities. There is always someone that has it worse than you.

A eugenic mentality pervades the US. It has for nearly a century.

It is a great evil, and it is difficult even for Catholics to recognize when it is creeping in to their thought process.

Remember we are all made in the image and likeness of God. We all have inherent dignity as persons. We all have immortal souls that will live with God in heaven. We may have physical or mental defects and suffering but those things have redemptive value for all mankind.

The eugenic mentality thinks those people are better off dead-- killed in utero, “weeded out” in “selective reductions” or “preimplantation screening”, or never conceived or born.

That is a flawed, human understanding of who we are as children of God.

We need not bring more children into the world when we have more than we can handle with the ones we have. But those who are open to more children should also not be chastised for being generous in response to what God has called them to do.

 

[1ke]

I appreciate that. Sometimes it’s hard to fathom why you have to sacrifice more than you already have.

Sacrifice is actually good for us. It is the birthplace of virtue.

 

[ArielRussu]

A eugenic mentality pervades the US. It has for nearly a century.

It is a great evil, and it is difficult even for Catholics to recognize when it is creeping in to their thought process.

Remember we are all made in the image and likeness of God. We all have inherent dignity as persons. We all have immortal souls that will live with God in heaven. We may have physical or mental defects and suffering but those things have redemptive value for all mankind.

The eugenic mentality thinks those people are better off dead-- killed in utero, “weeded out” in “selective reductions” or “preimplantation screening”, or never conceived or born.

That is a flawed, human understanding of who we are as children of God.

We need not bring more children into the world when we have more than we can handle with the ones we have. But those who are open to more children should also not be chastised for being generous in response to what God has called them to do.

I’m curious, do you have any personal experience in this area at all, can you identify with the plight of those with a genetic disease or who have a medical reason to avoid children? Do you know the guilt of passing on a genetic disease then watching your child suffer terribly and know that if you have another child they could have the same condition? Or are you preaching (don’t know if that’s the right word, can’t think of another ) Catholic doctrine with zero experience of you own of what it is like. Just curious because based on your posts, which are very pro-birth despite the risks, it doesn’t seem like you do. I mean it’s easy to say what you are saying until you actually are faced to faced with a real life dilemma and see your child suffering (as well a GIANT dent in your finances) and finally need to practice what you preach. After all, saying and doing are two totally different things. I mean I don’t think to those of us who know what it is like, see preventing children with these diseases from being born as eugenics, it’s more of compassion and a sign of responsibility and common sense.

After all, abstinence for those who are not affected by a genetic disorder or life threatening medical condition really have no idea how anxiety inducing pregnancy is nor do they understand what it’s like to know one decision can equal a life time of suffering for an innocent human being, or your death, as well as leave living children motherless and there spouse a widow.

 

[Hoosier_Daddy]

A eugenic mentality pervades the US. It has for nearly a century.

It is a great evil, and it is difficult even for Catholics to recognize when it is creeping in to their thought process.

Remember we are all made in the image and likeness of God. We all have inherent dignity as persons. We all have immortal souls that will live with God in heaven. We may have physical or mental defects and suffering but those things have redemptive value for all mankind.

The eugenic mentality thinks those people are better off dead-- killed in utero, “weeded out” in “selective reductions” or “preimplantation screening”, or never conceived or born.

That is a flawed, human understanding of who we are as children of God.

We need not bring more children into the world when we have more than we can handle with the ones we have. But those who are open to more children should also not be chastised for being generous in response to what God has called them to do.

This is 100 percent correct. Thank you for posting the truth without the uncessasary emotion. 1ke, as always, you are a valuable asset to these forums.

 

[csuther]

A eugenic mentality pervades the US. It has for nearly a century.

It is a great evil, and it is difficult even for Catholics to recognize when it is creeping in to their thought process.

Remember we are all made in the image and likeness of God. We all have inherent dignity as persons. We all have immortal souls that will live with God in heaven. We may have physical or mental defects and suffering but those things have redemptive value for all mankind.

The eugenic mentality thinks those people are better off dead-- killed in utero, “weeded out” in “selective reductions” or “preimplantation screening”, or never conceived or born.

That is a flawed, human understanding of who we are as children of God.

We need not bring more children into the world when we have more than we can handle with the ones we have. But those who are open to more children should also not be chastised for being generous in response to what God has called them to do.

I’m having a hard time understanding how what I’ve said supports eugenics. I wouldn’t trade my kids for anything in the world. If I could go back I would still have them. They are precious to me, and their disease and the grace with which they bear it has taught me more than I could ever say. But it doesn’t mean I want to bring another child into the world knowing the risks. There is a difference there. I am always happy for the fellow FA parents I know when they have a healthy child. I admire their courage. But I know I couldn’t do it. In fact we wanted a third before they were diagnosed. Again, I’m not sure how you can equate that with eugenics…

 

[Hoosier_Daddy]

I’m curious, do you have any personal experience in this area at all, can you identify with the plight of those with a genetic disease or who have a medical reason to avoid children? Do you know the guilt of passing on a genetic disease then watching your child suffer terribly and know that if you have another child they could have the same condition? Or are you preaching (don’t know if that’s the right word, can’t think of another ) Catholic doctrine with zero experience of you own of what it is like. Just curious because based on your posts, which are very pro-birth despite the risks, it doesn’t seem like you do. I mean it’s easy to say what you are saying until you actually are faced to faced with a real life dilemma and see your child suffering (as well a GIANT dent in your finances) and finally need to practice what you preach. After all, saying and doing are two totally different things. I mean I don’t think to those of us who know what it is like, see preventing children with these diseases from being born as eugenics, it’s more of compassion and a sign of responsibility and common sense.

After all, abstinence for those who are not affected by a genetic disorder or life threatening medical condition really have no idea how anxiety inducing pregnancy is nor do they understand what it’s like to know one decision can equal a life time of suffering for an innocent human being, or your death, as well as leave living children motherless and there spouse a widow.

You know, many of us do have experience. But there is no need to rehash clear consise and holy truth every time a new poster decides that they know better than the church God leads. Some of us have experiences with genetic diseases. Miscarriages, and the life of the mother at stake. Some of us unfortunately have experience with all three. The church leads us down the holy path. Driving us to put aside ourselves, our needs and our lusts to achieve sainthood. Because that is the goal. Sainthood for my wife and my kids, no matter how normal or abnormal. You view can cause serious pain to those struggling and serious scandal to those who are scared.

Feel free to review posters historical posts if you wish to know thier experiences.

Also this silly idea that only those who have experienced something can comment on the morality of something is flawed and always skews to the immoral unholy.
The mind if the church is the mind of God who knows all and has seen all and suffered more than we will.

I don’t have to eat dog feces to know it tastes bad.

 

[AdamP88]

You know, many of us do have experience. But there is no need to rehash clear consise and holy truth every time a new poster decides that they know better than the church God leads. Some of us have experiences with genetic diseases. Miscarriages, and the life of the mother at stake. Some of us unfortunately have experience with all three. The church leads us down the holy path. Driving us to put aside ourselves, our needs and our lusts to achieve sainthood. Because that is the goal. Sainthood for my wife and my kids, no matter how normal or abnormal. You view can cause serious pain to those struggling and serious scandal to those who are scared.

Feel free to review posters historical posts if you wish to know thier experiences.

Also this silly idea that only those who have experienced something can comment on the morality of something is flawed and always skews to the immoral unholy.
The mind if the church is the mind of God who knows all and has seen all and suffered more than we will.

I don’t have to eat dog feces to know it tastes bad.

Exactly. In any case, to bring this back to the OP’s question. Just because you have epilepsy does not mean you can’t have a happy marriage and children. I know the fears that go along with epilepsy (obviously not the ones specific to childbearing). The fear that you may have a seizure and nobody will be there to help, the fear that you’ll be mistaken for someone drunk or high when you’re post-ictal. (This happened to me once) Or the fear that you might never wake up after a seizure. However, for this particular condition, there is much hope for treatment and management. Many women with epilepsy are able to work with their doctor to ensure safety for mother and baby during pregnancy.
While we’re on the topic of genetic conditions, the chances of you having a child with epilepsy is less than 5 in 100.

 

[1ke]

I’m curious, do you have any personal experience in this area at all, can you identify with the plight of those with a genetic disease or who have a medical reason to avoid children? Do you know the guilt of passing on a genetic disease then watching your child suffer terribly and know that if you have another child they could have the same condition?

For the bazillionth time: NO ONE is stating that you or anyone else should or must have a child or another child if you have a genetic condition.

What I am saying is that not everyone feels as you do and not everyone shares your sentiment regarding guilt and not everyone believes that brining a child with a genetic condition into the world is an abhorrent injustice, including some who ARE parents of children with genetic diseases or carriers of diseases or those with a disease or defect who decide to have children.

You pronounce judgment upon those who make choices different from yours, while telling people not to judge your decisions.

very pro-birth despite the risks

Please point to any post where I have said that people should or must have children if they have a genetic condition or they have a child with medical needs and don’t feel they can bring another into the situation.

You cannot, because I have not stated that.

What I have done is state the opposite: you, and others, can avoid indefinitely

I mean I don’t think to those of us who know what it is like, see preventing children with these diseases from being born as eugenics, it’s more of compassion and a sign of responsibility and common sense.

There is a difference between discerning that you are unable or unwilling to have a child in that circumstance and declaring it immoral for anyone to make a choice different than your choice.

There is also a difference between deciding not to have children indefinitely and killing them in utero or via assisted reproductive technology.

After all, abstinence for those who are not affected by a genetic disorder or life threatening medical condition really have no idea how anxiety inducing pregnancy is nor do they understand what it’s like to know one decision can equal a life time of suffering for an innocent human being, or your death, as well as leave living children motherless and there spouse a widow.

Abstinence is difficult, especially for prolonged periods. It is, however, the only moral means of spacing or avoiding children. Yes, it takes virtue to abstain when necessary in marriage, especially when it is extended.

 

[1ke]

I’m having a hard time understanding how what I’ve said supports eugenics. I wouldn’t trade my kids for anything in the world. If I could go back I would still have them. They are precious to me, and their disease and the grace with which they bear it has taught me more than I could ever say. But it doesn’t mean I want to bring another child into the world knowing the risks. There is a difference there. I am always happy for the fellow FA parents I know when they have a healthy child. I admire their courage. But I know I couldn’t do it. In fact we wanted a third before they were diagnosed. Again, I’m not sure how you can equate that with eugenics…

the idea that you would feel “horrible and guilty” that is the eugenic mindset creeping in and telling you that you must avoid having a child with genetic problems at all costs and you are a bad person if you do.

You had your reasons for not having more children. But if you **had **become pregnant you would love your child whether they had a genetic issue or not. As you say, you love your children and would not trade them for the world, and their disease is a grace. So why would you feel “horrible and guilty” ?

The eugenic mentality would tell you to be screened and abort a child if they were not perfect. That this is somehow the responsible, right, and moral thing to do. And if you don’t you are a “horrible” person. It’s been said by another poster on this and another thread.

That is antithetical to Catholic teaching.

 

[ArielRussu]

You view can cause serious pain to those struggling and serious scandal to those who are scared.

Well seeing how we are dealing with a child’s life, of course my words should, it should scare them! I’m speaking REALITY, I’m not allowing myself to live in a bubble where I can imagine everything turning out fine while hoping against all hope that everything turns out OK. Do you not think the church view TERRIFIES me? That it doesn’t fill me with pain? I was born with a terrible disease that in other forms can have even more devastating consequences, so I speak from experience when I say I know what it’s like to struggle with my concious about whether or not I should every have kids let alone marry! As according to the church it is Ok to not have children for serious reasons but you have to do it within means the church deems acceptable and for some reason sterilization is against the commandment “though shall not kill” when your not even killing anyone, except tissue in your body that contains the potential of passing onto a child a genetic disease. And in my opinion, I can’t bring myself to torture myself with the anxiety and terror of a pregnancy scare because I relied on NFP and played with fire, to me I’m not open to that, it’s said to be affective but I believe it is better to just remove the causative problem so you can go on with your life without all the anxiety and careful planning involved. As it is I really and truly could careless about my internal reproductive organs, cut them out and throw them away!

 

[ArielRussu]

So why would you feel “horrible and guilty” ?

Most likely because she has seen the pain and suffering her two living children have to go through on most likely a daily basis. She also has to live with the knowledge that her two children will not live too be adults. That alone is enough to feel horrible and guilty about passing on her children’s disease to another innocent baby. It shows she has a heart and conscious (not saying you don’t!) because who would be happy to see another child live through what her two kids have already and will live through in the future? After all just because you love the children you already have with a condition does NOT mean you wish it on another, so you can experience having another child. With these conditions you HAVE to think of the child, not what you would want.

 

[1ke]

so you can experience having another child. With these conditions you HAVE to think of the child, not what you would want.

You are the ONLY person ascribing such motives to anyone.

 

[1ke]

You know what. We have completely derailed Aussie Girl’s thread. And I am guilty of continuing the off topic discussion.

Going to report to Mods that this has gone off topic.