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I was in shul recently and someone from Israel came around collecting. The gist of his story is that 7 out of his 10 kids have cystic fibrosis (a genetic disorder) and that the treatment is getting expensive.
What is the heter to have more kids if you know there is a 50/50 shot of them having CF too? Would a Rav advise them to keep having kids? Is it fair to the children born with the disease?
I know there ultimately it’s up to Hashem and that even families without a history can have children with a disease. But don’t we have to do our hishtadlus too?
Thoughts?
Isn’t there a less offensive way you could have asked this question?
You make it sound like you’re mad these kids were born because now he is asking for tzedaka. Why didn’t you just generically mention that you know of such a person and ask if it is appropriate?
“Heter to have kids”? You need no such thing. You have a *chiyuv* to have kids.
A very insensative question. For all you know the man asked a shaila of his rav. We must trust that these children are part of Hashem’s plan.
R’ Shlomo Aviner allows Down Syndrome fetuses to be aborted b’chlal.
When Rav Soloveitchik, zatsal, was asked about aborting a Tay Sachs fetus, his psak was pashut- we have a Tay Sachs kid in Brookline, look at him, and you tell me what to do.
If you can abort a child on the basis of a pre-natal test showing the child probably has a serious physical or mental deformity, why not allow smothering the child after birth when you can be sure. Even better, why not wait a few years until you can be sure the deformity is all that bad (e.g. some children with Down’s Syndrome are able to go to school and hold down jobs – so why not wait a while) if the kid doesn’t measure up, dispose of him before he drags down the family.
I’m not sure what the Rabbanim would say. However some goyish legal systems have had provisions for getting rid of those whose lives aren’t worth living (if Ha-Shem slips up, maybe we can help by cleaning up the mistakes). The only real problem politically is that the country the led the way in “eugenics” and in supporting elimination of undesirable people from the population had to back track when they lost a war and their enemies decided that such behaviors were illegal and criminal (retroactively, of course).
Good gracious. Stop attacking the OP. He isn’t saying that these kids shouldn’t be in this earth or c’v he wishes they weren’t, he is just asking ( an interesting) question in my opinion.
Akuperma: Be careful how you speak. The Tzitz Eliezer and Rav Ovadia obviously see a big difference.
Note that for recessive traits (such as Tay Sachs and Cystic fibrosis), genetic testing which is widely down in the frum community can prevent a shidduch in which both parents have the trait (which is what is required for a possibility of having a child with the condition), and that even if both parents are carriers, there is only a 25% chance that any given child will have the trace. Due to genetic testing (and arranged marriages), these diseases are increasingly rare in our community. While it is possible, the odds of having 7 out of 10 children display a recessive genetic trait are quite small (it can happen, but is extremely unlikely).
It should also be noted that Cystic fibrosis is treatable, and most people with the disease live until middle age, and in the US, most graduate from university. I’ld question whether killing a kid for having the disease is worth discussing even if allowed. Downs syndrome results in a variety of developmental disabilities, but kids with the disease (which is not a genetic disease) often live to adult hood. The boys get bar mitzvas. They often can be self-supporting with adult but do need family support. Tay Sachs is currently incurable, but that is liable to change. Any psak halacha from more than a few years ago should be considered meaningless since conditions are changing, and the psak should come from a rav who is keeping up on current medical developments.
I am not commenting on the appropriateness of someone continuing to have children with a serious genetic disease. I would like to point out however, that the life of a child with CF can be horrific torture at times, even with medical advances. The life of the parents or caregivers for that child is also extremely challenging and stressful, because watching a child struggle to breathe is unbearable. Even when the child is doing fairly well, there is always the threat of an imminent attack. It is the nature of the condition.
No one can tell someone to have or not have children. But seichel suggests to me that if someone knows for certain that the odds of a child having a hereditary eventually terminal illness are great, that person should receive proper guidance both medically and halachically, as to how to proceed. We are not allowed to be somchin al haneis. If 7/10 kids have CF, it stands to reason that any other children to follow are more likely than not to suffer from the same.
There is a reason why Dor Yesharim was established. Should those behind that program be told that they are wrong to try to prevent tragedies before they arise? I think we need to be better educated, and to encourage people to know their medical history well, so we can try to stem the tide of genetic diseases becoming more prevalent. the best and easiest place to start is BEFORE a marriage takes place. Hashem Yeracheim on all our children, that they should be healthy and live long lives.
Oomis, I read your comments and was taken aback Maybe you are B’H healthy and have no need to worry about such things. If someone was going through such things, they would be a bit more sensitive, who take their health for granted and can not understand how hurtful it is for someone to tell others not to have children. So basically what your saying if someone knows they have a hereditary disease, they should not get married. You say one should not relay on miracles, but you know what, we all are relaying on miracles everyday. Everyday, we wake up and we can up our eyes. Everyday second that we can breathe. When we are able to cross the street, and get across safetly that is a miracle. We are all needing miracles to make it through each minute of our lives. For you to say one should not get married,is wrong, who knows what Neshomas are suppose to enter the world. You don’t know the cheshbons of Hashem. Hashem commanded men to get married and have children. What happens if a man decides to not have children, because he has a genetic disease and after a 120 comes before the Creator and is asked “why didn’t he have children?”
I know someone who had a hereditary disease. His mother had it, uncles and a grandparent as well. Half the siblings had the disease and half didn’t. So from what you are saying, is his mother, never should of had kids??? Then the other healthy children, would have never been born. and those healthy children had healthy children as well. So the one of her kids with the disease married and had children and it’s possible that the children may or may not have it or not. Those children shouldn’t get married?? People can be healthy all their lives and they can be taken in a second. Or they can be sick all their lives but still manage to be productive in society. It is not your call to say not to have children.
This is a thread that requires great rabbinical guidence, and the opinions of what the layman have to say are sometimes best kept to themselves.
Mazal, If there was any sensitive, considerate, considerate poster here – it is her. Read again. She’s not positing not having children C”V, only to try to pick the right mate. To use the services readily available. Read again. She wrote to “seek proper guidance etc.”
Mazal, you really need to re-read my post. I did not say what you seem to think I said. In fact, my very first sentence says that I am NOT commenting on whether or not someone should have children or not, when there is a genetic disease. I specifically said they should consult with halachic and medical authorities, especially in a case where there is a clear propensity to such disorders.
I absolutely did NOT say ANYTHING WHATSOEVER about whether or not such a person should get married (where on earth did you get that from?). The whole purpose of Dor Yesharim is to help couples to get married in a genetically safer way so that they can have the best chance to produce healthy children BE”H. As to the miracle statement, are you telling me that what our Chachomim said about not relying on miracles, should be disregarded? I didn’t make that phrase up out of my head.
Please do not presume to know what health issues my family and I might have or not have. Everyone has his/her share of tzoros, even if they do not advertise them. Hashem should help all of us to have healthy children and grandchildren.
Mazal: If BOTH parents have to be carriers, make sure not to marry someone who is a carrier. That is the reason for Dor Yeshorim.
I would like to tell a story. I hope moderators publish it even though it’s crude and not really suited to the website, but perhaps it can be an additional element for considerations about prenatal and prenuptial genetical diagnosis.
I saw a well-known specialist, and let me remark, an atheist and a nonjew. I did not go to him to waste his time, nor did I ask out of hypocondrya: we had reasons.
First of all, kol hakavod, he was extremely honest, bordering on brutal, and told me that the one and only solution which medical science makes available in our days, is abortion. The pre-pregnancy tests are unreliable: actually, over 80% of pregnancies (not zygotes, but pregnancies, ie the embryo implants) in supposedly healthy couples are nonviable and most women don’t even realize about them. Viceversa there are couples where genetic testing shows problems, but do have healthy children, and we have no clue because we do not fully understand gene expression, much less do we understand the interaction with immune system and other biochemical chains. Usually the implant of nonviable embryos, such as the trisomies which are not compatible with life (not Down, but those with life expectations of a few months) either does not happen or it fails shortly afterwards, which is the reason most pregnancies (among those pregnancies we notice, that is) appear to be healthy. Or, simply, these couples have bad genetic tests but might keep generating healthy zygotes that divide and implant normally and grow to term into beautiful and healthy children and adults and have a long healthy life. Genetic science has gone a long way from the “dogma” that a gene codifies a single protein and expresses a single phenotype trait.
That said, he added that he does his best with diagnosing couples who find it morally acceptable to abort a foetus with severe problems, which does not mean committing to do – some change their mind and this must be respected, but if one has no intention of aborting to begin with, then it is pointless to do medical procedures which are potentially harmful to the woman and the foetus and are a cost for the taxpayer and a waste of time for medical professionals who have many patients and little time.
Having clarified that, he pointed out all he could guarantee is his effort to provide state-of-the-art medical insight according to which the patient must decide whether or not to terminate pregnancy. It is well-known that many “therapeutically aborted” foetuses turn out to be physiologically fine at autoptic exam, which adds to the tragedy of a couple who aborted a beloved and desired foetus. In addition, he told me about a couple who went to great length and expenses to have a genetically healthy baby, after various tragedies. I will not detail the medical history to protect the privacy of a fellow patient, I will only say the family, who was determined to terminate the pregnancy if there were serious problems, did all available exams, not only genetical but also functional. The baby however only survived for a few months of (very difficult) life: was genetically healthy but had a congenital defect which was not possible to diagnose in utero. There was no fault and no medical error by the doctors who did 3rd level ecography, blood flux and whatever other tests: only with extrauterine circulation and respiration was it possible to diagnose the problem. The doctor said, this is how things are, think about it, talk about it, and if you need, I am here.
I thanked him a lot and chose basic prenatal care, declining further testing.
If parents know they won’t abort, why waste money on all these expensive tests?
Reb Moshe paskened that one shouldn’t have amniocentesis, because he paskened against all abortions except to save the mother’s life.
You make it sound like you’re mad these kids were born because now he is asking for tzedaka. Why didn’t you just generically mention that you know of such a person and ask if it is appropriate?
Because this is three different questions:
1: Should one bring such a child into the world?
2: Should one bring such a child into the world, knowing that he will need others to support him by doing so?
3: Is there a Chiyuv for the Rov who says to go ahead to collect money for when it is needed? IIRC, the Tzitz Eliezer used to say (for older women who were afraid to have children due to genetic defects) have the child, but come to me for a heter if there are genetic abnormalities. Isn’t that the chiyuv of the Rov? if so, why is this person collecting? He should be home taking care of his children, while his Rov should be out collecting.
Tangentially, I recently heard that Puah in Israel is starting to work on IVF for genetically problematic couples to avoid issues like these.
rebdoniel-
People may do more invasive testing to confirm any health issues the baby may have.
If c”v any baby would have any red flags I would not give birth in my local hospital.
MomX4 in some cases this makes sense, say a couple who needs to make life decisions, but there are other minimally invasive and low risk tests with good confidence level, one can e.g. seek foetal cells in maternal bloodstream, which together with an accurate ecography (with a well-calibrated machine) and tri-test or 4-test are pretty reliable. Rabbi Moshe was niftar before the latest advancements in medicine and there are options he did not know about. These tests should actually be offered before amniocentesis or villocentesis, because a biased sample causes many false positives and false negatives, but unfortunately, this does not always happen.
However, in most cases it makes little or no sense to know in advance, it’s just extra heartache and stress, and also, there are many potential problems and only few can be diagnosed even with invasive exams such as amniocentesis and villocentesis. Also, for Down Syndrome there’s no reason to give birth in a hospital with NICU. If a person feels safer in giving birth close to a NICU, they should just plan to go to a larger hospital. Peace of mind is important and helps with an easy birth.
my friend was told she was having a child with down syndrome. Well her child is healthy and typical B”H>
Well Tay Sachs is considered almost extinct, I have seen reports showing in recent years, no Jews
were born having it, in Israel or the US.
The Mumbai shluchim, Rabbi and Mrs. Holtzberg hy”d, had two children with Tay Sachs. Despite
the results of their Dor Yeshorim tests, they got married.
em0616, do you know for sure they used Dor Yeshorim?
My understanding (which may be out of date) is that most cases of Tay Sachs these days are among non-Jews (especially Cajuns).
Yes, they for sure used Dor Yeshorim. They decided to go ahead anyways, basing on the Igros Kodesh.
And it was a shidduch made in heaven, they were an inseparable couple, and very devoted to each other.
If I understood correctly the OP is raising a point I too have wondered about. I have also heard of people who had many ill children each of whom required very expensive treatment which they could not afford without external help (ie Tzedoka) but seemingly continued to have many further children anyway.
To my mind this boils down to the Psak of the Rov re family planning. Here in the UK at least one Rov advocates waiting until the mother is emotionally capable of caring for her baby. Some women need more time than others. Other Rabonim, especially in print (seforim re Niddah), are much stricter, and seemingly forbid family planning in any shape or form. In such a structure a couple has little choice but to continue procreating, despite the tragedies that ensue. I wonder if it would help if people in such situations were made aware that other Halachic solutions exist and that there are rabonim who are more Meikel. It certainly seems tragic and cruel, in some ways, to make a couple continually bring sick children into this world to suffer.
I wonder if it would help if people in such situations were made aware that other Halachic solutions exist and that there are rabonim who are more Meikel.
It sounds like you are advocating kula-shopping. If one received guidance from his rov, unless he hes permission from his rov, he should not ask another rov.
DY, a person may ask any number of rabbonim for their professional eitzah/opinion, but only one Rov for a p’sak.
Yes, Oomis, but I read that post as referring to appealing a psak.
rabbi_dr-fascinatimg question.
Chiskiyahu hamelech saw binivuah that he would give birth to menashe-who would be a choteh umachteh es harabim on a grand scale. He chose not to have children. Chiskiyahu got sick, and the navie came in to inform him that he would die as punishment for his sin of choosing to not procreate. Chiskiyahu did tshuvah and Menashe came from him ( and another son who was a great tzaddik)
Amram-the gadol hador- separated from his wife due to Paroh’s decree of killing all male children. His entire generation followed suit. He accepted Miriam’s rebuke and got back together with his wife Yocheved-knowing that the rest of klal yisroel would do the same. Moshe rebbeinu was saved, but countless other yidden willingly had children, knowing in advance that if it’s a boy, the infant would be thrown into the Nile and die by drowning-as indeed so many did.
I am curious to know what the din is and would it make a difference if they were already mikayem pru urvu. Also would the couple have the option of getting divorced in order to avoid this issue, especially if they can each get remarried to someone who is not a carrier.
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