Genetic problems and having children

iVillage Member
Registered: 03-27-2003
Genetic problems and having children
15
Wed, 02-04-2004 - 9:54am
Hi, I'm a frequent lurker looking for some spiritual guidance. DH and I are practicing Catholics, very pro-life, and use NFP when we're trying to avoid pregnancy. Shortly after my son was born (he's 1 now), he began getting brown cafe-au-lait spots on his body. I mentioned to his ped that I had been evaluated for neurofibromatosis as a child (I have the spots) but that nothing ever came of it.

To make a long story short, after checking with my mother, I found out that the dr. *did* say I had NF, but as I had never developed any problems, it was never mentioned again. Now that my son apparently has it, however, I've had to learn a lot about it, and I've found it can be a terribly devastating disease. While some people have cases as mild as mine, with no more problems than brown spots, severe problems can range from disfiguring tumors on the skin to learning and language disabilities (I had none of those problems). There seeems to be no correlation in severity among family members, so just because I have an incredibly mild case doesn't mean my son will be as fortunate.

DH and I very much want another child, but we're heartbroken with thoughts of what our son may face and with the knowledge that any other children have a 50/50 chance of having the disease. Some drs. we've seen seem to think that we should avoid having other children. Our heart and our faith tell us that life is sacred no matter what, and that the thought that only perfect lives are worth living is part of what's wrong with our culture. (And what degree of impairment makes a life *not* worth living?) However, then guilt kicks in, and we wonder if we'd be selfish to have another child knowing that he or she could face a life filled with disability and/or disfigurement.

I know no one can answer this question for us, but I'm in need of some moral guidance. Is it more moral to welcome life and trust in God even knowing there could be problems? Or is it more moral to put our own selfish desires for more children aside rather than taking a risk of having a child who will suffer? Thank you for any thoughts on this matter.

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iVillage Member
Registered: 03-27-2003
Wed, 02-04-2004 - 3:57pm
The risk of suffering is not always a punishment it can sometimes be sent by God for our good. (John 9:3) St. Paul even finds joy in his suffering. Col 1:24.

Other examples about our attitude toward those things that we suffer in our lives are found in 2 Mac 6:12 and 1 Peter 3:13-17. I suggest that you consider other children and let God be God.

iVillage Member
Registered: 03-27-2003
Wed, 02-04-2004 - 4:14pm
That's what my heart and my gut tell me before the guilt kicks in. My own suffering I can handle; it's inflicting it on a child that bothers me. However, I also have to ask myself if my conscience is properly formed or if it's unduly influenced by our culture's lack of respect for life.

Thank you for your response; it's really what I wanted to hear.

iVillage Member
Registered: 03-27-2003
Wed, 02-04-2004 - 5:47pm
I heard this once maybe it will help. Involving Abraham and Isaac. God asked Abraham to sacrifice his son Isaac. Was it so that God could see the depth and strength of Abraham's faith? No, God is all knowing, He already knew the depth of Abraham's faith! He wanted Abraham to know the depth of his faith.
iVillage Member
Registered: 03-27-2003
Wed, 02-04-2004 - 6:22pm
I'll have to think about that. That particular story has always troubled me more than any other story in the Bible. Abraham might have realized the depth of his faith, but what did Isaac learn about his father's love? I realize things were different then, but it still bothers me. Thanks for the food for thought, though; I'll ponder that one. I see how it could be relevant.
iVillage Member
Registered: 03-27-2003
Wed, 02-04-2004 - 6:52pm
I wanted to tell you that your first post did make me think of something that hadn't occurred to me before. I've been so concerned about "dooming" a child to suffering...but it's not just about this life, is it? Our child will have an immortal soul and will live with God forever. That's what it's all about, isn't it?
iVillage Member
Registered: 03-28-2003
Fri, 02-06-2004 - 11:22am
I've been thinking about this for a few days. It seems to me -- although I'm no moral expert -- that both trying to conceive or trying to avoid by using NFP would be morally acceptable. (Unacceptable options would be artificial birth control, sterilization, abortion.)

Keep praying about it -- that you'll be open to God's will. He'll do what is best. I know it is hard to give up control like that, so that's the type of advice that is hard to follow -- how can you not worry? And what do you do as you're waiting for His will to be revealed? Try to avoid or try to conceive?

It does sound as if you are being pulled to have more children. Of course, adoption is always an option too. One important factor -- you have the capacity to love another child, even if he/she has some medical problems. That love is what will sustain that child and help him/her deal with any difficulties that arise. Isn't a "perfect" child born to bad parents worse off then a child with some medical issues born to parents who love and care for him/her?

Sorry to be of so little help -- I'll say a prayer that this dilemma resolves itself the way it should.

Polly

iVillage Member
Registered: 03-27-2003
Fri, 02-06-2004 - 12:41pm
Thank you.
iVillage Member
Registered: 02-06-2004
Fri, 02-06-2004 - 6:22pm
I am no expert either---hardly. If I were in your shoes I would *consider* adoption. If you adopt you are giving one of God's children a better chance at life and I don't think God would be angry at you for that. I believe God will always have you follow the course He sets out for you. If I was that torn, as you seem to be, I would adopt and see if that filled my void. If it still doesn't and after adopting you still feel the need to have your own natural children then I would take that as a sign from God that he wants you to have more. Then I would try to have more naturally. Perhaps he wants you to adopt though and that is why you were born with that disease to begin with and found out about it when you did. Perhaps the suffering comes in the form of not being able to have natural children of your own blood. Just a thought. In any case, pray to God about it and look for HIS messages of guidance. I believe that God does things for many reasons and sometimes not for the most obvious reason you might think. I am not particularly schooled on religion as much as others but in my heart every time I have asked God something He has answered me and that is more than good enough for me. Try praying to him yourself about this. I hope you get the answer you are looking for.
iVillage Member
Registered: 03-28-2003
Fri, 02-06-2004 - 10:03pm
I guess what I would ask you is are you desiring another child right now (or in the relatively near future) or are you trying to look at the big picture?

In otherwords, if you want to get pregnant again soon I think you are most certainly being called by God to have more children. And should!!!

Or perhaps you are looking at the overall picture...in which case I think sometimes its best to just see what happens and where God is leading you. I personally know that I am a control freak and want to have all of these moral decisions made ahead of time...so I know my course of action. But I don't think that is always the best thing. Sometimes we evaluate, make up our minds, and then don't have a tendency to *listen* to God as time goes on.

I hope this has come across OK. I'm certainly not chastising you for thinking about these issues (as parents we have to), but I'm encouraging you to pray and not try to make sweeping decisions right now.

Lisa

(another non BC, pro-life mom...expecting #8)

iVillage Member
Registered: 03-27-2003
Fri, 02-06-2004 - 11:06pm
I didn't even remotely think you were chastising me. To answer your question, though, we are thinking near-term. I'll be 37 next month, lol, so it's pretty much now or never! We had already started ttc when we saw the geneticist. Not that we learned anything new this time, but being spoken to very bluntly as to what the risks are gave us pause. Since neither ds or I are having any problems right now, it was easy just to go along with our life's plans in the 8 months since we first met with the geneticist.

Perhaps that's my answer. We knew what the risks were shortly after ds was born and started getting spots. At the time I was devasted -- I was sure I'd never be happy again. Within a few months, though, my emotions were back on track and dh and I were discussing more children. It's seeing the doctors who are keeping an eye on ds that gets things very raw.

Thank you for your response. I, too, am a control freak, and I know exactly where you're coming from as far as figuring out your course of action ahead of time. Thanks to my age, however, there really is no ahead of time!

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