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Have you ever been in love? Have you ever gazed into another's eyes and known that your search was finally over? After five years of dating, I had met the man with whom I wanted to build a home. He was everything I was waiting for. David was so kind, so real; he was a person I felt I could share my life with. He understood me. We felt unstoppable. We were to be engaged. And then the phone rang.
It was Dor Yesharim calling to tell me that David and I were both carriers for cystic fibrosis (CF). Cystic fibrosis is a genetic disease that slowly destroys the lungs. Average life expectancy is 32 years of daily medication, frequent hospitalization, and pain. We were told that our children would have a one in four chance of suffering from the debilitating and fatal disease. We consulted with medical experts and authorities in Jewish law. We could have chosen to marry and drastically reduce the chances of our conceiving a CF baby. But nothing is certain, and we decided that it was a risk we could not take. The life that I was so eager to begin had been denied me. I'm not sure that I will ever know why. Sometimes life just happens and we cannot control it. But learn from me. Being a carrier for a genetic disease is not uncommon; one in 20 Caucasians carries the gene for cystic fibrosis. One in every 25 Jews of Eastern European descent carries the gene for Tay-Sachs, a disease that kills its victims within five years of birth. Being a carrier cannot affect future generations unless both parents are carriers of the same genetic disease. Test yourself -- discover whether or not you are a carrier. There is no danger in knowing. The likelihood of loving another carrier is slim, and merely being a carrier means nothing for the health of your future children. Should you be a carrier, check the other person's status as soon as possible in a relationship. The alternative -- to wait until you so deeply care about someone that a finding of incompatibility will pain you so profoundly that waking up in the morning almost seems not worth the effort -- is awful. No one should have to endure what I went through and find out at such a late stage. I was naive and thought that there would never be a problem with our test results. After all, there was never a problem with other men I had previously dated. But when it really counted, I was severely disappointed. I don't want that to happen to you. I urge anyone in the dating world to get tested and become more aware. Being a carrier should not be a stigma. I am 100% healthy, but the result of a union with another carrier can lead to a sick child. Should this happen to you, you are not alone; people have been down this path before. Everything happens for a reason. I can only pray that with hindsight I will come to see that the choices I've made -- and the choices that have been made for me -- are for the best. Life can sometimes deal harsh blows. We can choose to get crushed beneath them or to rise above them. They test our faith and our resilience. My situation is not futile if others benefit from it. I feel I have to use my voice to reach out to others and to inform the Jewish community to be aware. I pray that I will one day understand why I've been tested in this way. This was my fate but it does not have to be yours. There are two ways you can check your status -- directly and indirectly. Your doctor can take your blood and send it to a lab for tests to see if you are a carrier for any one of nine diseases. There should be no cost other than office and lab co-payments since insurance companies acknowledge the possibility of higher risk in the Jewish population. Results should be back within two weeks. Alternatively you can get tested through Dor Yesharim, a Jewish organization that tests for one of five diseases. Each time you date someone, you must check your number with his or hers to see if it matches. You will not know if you are a carrier unless you are dating someone who is a carrier as well. Dor Yesharim can be reached at 718-384-6060 and the charge is $200. Click here for related article, "The Ethics of Genetic Screening."
Published: Sunday, November 16, 2003
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A brief explanation from the other side in this story...
I feel I should expound a bit, for the benefit of the reader. The article was written by a young woman who truly believes in doing the right thing, no matter the cost. She is an incredibly sensitive and caring person, very mature and very responsible. The decision to go our separate ways was for the most part my own. Future abrasive comments should be directed toward me, not her. We are very much aware of our alternatives, and our decision was made accordingly. Going childless wasn't considered for even a moment. As
religious Jews who have firm belief in our religious practice, the thought of not being able to share the beauty of truth with our future generations wasn't an option. We became educated in the various options available, and though there are many who have found solace in knowing there are options and taking advantage of them, for numerous reasons, both personal and practical, I felt that this was not the road for me to go down.
Over the course of this ordeal, we became aware of many couples, some in our own communities who
were confronted with the same test of character. Who's to say who is right?
Does it take a stronger man to ignore medical fact and what many would see as message from God, and hold on to the one he loves? Or maybe the stronger man walks away from his beloved because he cares so much that he never wants to see her suffer, he never wants to see her cry when their baby struggles to breathe. Maybe he knows that the pain of heartache will go away, but signing up for a lifetime of grief is not the wedding gift he had hoped to give to the woman he loves. I believe that God's ultimate plan will enlighten us.
Thanks to those readers who showed concern. It's an incredible thing to know that there's a support group of genuinely concerned people. But, I believe the purpose of this article was to encourage Jewish couples to get genetically tested. If, God forbid, there should be anyone
else who has to go through our dilemma, know that your decisions are your own and that no one has the right to question what you have deliberated upon and chosen. If I can help you in any way with information (and I've got lots of it) or encouragement please contact me via the aish.com editor. May we all be blessed with peace tranquility and good will.
(54) Lillian, 21/11/2003
My story
I wish I had written a personal story on the perils of genetic incompatibilties rather than this unfortunate young woman.
My husband and I faced a similar situation eight years ago. Before he would marry us our Rabbi insisted on a genetic test. Thank goodness he did because we were both carriers for Tay Sachs.
The thought of concieving a child with such a bleak prognosis was unthinkable and although I personally support legal abortion I myself could not go through it and survive emotionally intact.
What I have heard from the comment and from the article are some of the doubts that my husband and I had. Except that we overcame those doubts through reason. Perhaps it was due to our slightly higher age, we were in our later 20s, which made us older than many of our other religious friends when they married.
Our Rabbi gave his blessing for us to use contraception and we got married. Although my husband was not completely sure of whether or not he would be able to love an adopted child or if we could financially handle IVF we decided very firmly that we would have a family.
To "share the beauty of the truth with future generations" does not mean that it has to be the "regular" way of concieving or if those future generations are adopted. ANd while these options are not pratical as mentioned they are viable. My husband and I decided that life was certainly not easy and that H-shem must have sent us this curse for a reason.
Not long after we married we found the reason. ...
We decided to become foster parents and see what it was like to take care of children that were not our own. We went through the approval process and soon were asked to take care of a toddler and her sister because their single mother had fallen ill and there was no one who could care for the children as well as bring them to their mother's hospital room on a daily basis.
I felt so blessed to be able to do this for this woman who I learned had fled an abusive husband and started over even though it conflicted with her family's belief that she should have stayed. We were so happy once she was recovered and able to take care of her beautiful children. To this day we still have contact with them and are proud to say that they now have a new father who loves them and new siblings.
Similar situations followed until one day we got a call. Knowing our desire to adopt the social worker infromed us of a case where four siblings needed a home desperately. So far no one had wanted four children at once and she was hoping that we would open our hearts.
Before we knew it we were parents to a 6,4,2 and 6month old. Their parents had died tragically and other than an elderly grandmother there was no one to care for them.
That was just less than seven years ago. Recently our oldest boy celebrated his Bar-Mitzvah. It was attended by his biological grandmother (who was wary of her grandchildren being raised Jewish, but now attends functions at the JCC and fits right in with all the proud Bubbes). His three living adopted grandparents and several more siblings. You see, we adopted three children after that. Two siblings from Ukraine (the birthplace of my grandparents) and a bi-racial baby girl whose mother had been our foster child (its an open adoption).
And there is an eigth child. Sleeping soundly in her bed. A year ago I was horrified to hear that I was pregnant. Not knowing what to do we listened to our doctor and waited until amnio-centsis and genetic testing could be done.
We lived as always and I was selfishly grateful to know what being pregnant was like. But also with the constant dread that I was carrying a sick child who would know only suffering. Finding out that our child wasn't going to have Tay Sachs was the happiest day of our lives.
I don't htink I would have had my life any other way. B/c of the "curse" of a bad gene I was able to give four siblings the chance to grow up together and to grow up surrounded by judaism. Otherwise they would have gotten seperated or ended up in the system never knowing a loving home.
Two children from Ukraine were saved from a life in a bleak orphanage where no one would hold or love them and where they'd be kicked to the curb at 18 with nothing but twenty dollars in their pocket and no one to ever relie on. Then it allowed us to help a mother know her child would be forever safe and loved while she turned her life around and went to school and gave herself a future.
And finally the miracle that came to us recently....
It wasn't an easy path. But nothing good comes easily. Yes, its easy to say goodbye b/c having a family might be more difficult than usual. But the rewards are far more reaching.
I don't htink I would have ever adopted had I not had this put upon me but I have to believe that there was a purpose to all of this.
I only hope that the couple here may not have been seperated for so long that they may not re-unite and see the blessings under their curse.
(53) Judith, 13/2/2008
peru u'revu
The final paragraph says (in italics) that Dor Yesharim tests for 5 diseases. They actually test for 9: Tay-Sachs, Familial Dysautonomia, CF, Canavan Disease, Glycogen Storage Disease Type 1, Fanconi Anemia Type C, Bloom Syndrome, Mucolipidosis Type IV and Neimann Pick Type A (Gaucher's Disease is done by request only).
in response to comment #17 - apparently many respected gedolim have approved of Dor Yesharim since frum high schools provide testing for their students, YOB being one example.
What I haven't read in any of the comments thus far is that there is a Torah obligation on a man of peru u'revu - to have children. There is only one way to fulfill this mitzva and that is by having your own, biological children, a minimum of a boy and a girl who go on to have children of their own. By adopting a child, one does not fulfill this obligation.
As for going the IVF route, it is emotionally taxing (and extremely expensive) and and that doesn't seem to be a wise way to start off a marriage.
(52) Reut, 31/1/2008
To "David"
Kol Hakavod for writing your comment. I shows real concern and maturity. I hope everything turned out well for both of you.