Avoidable Heartbreak

January 12th, 2017 Posted by Susan's Musings 18 comments

Most of the time, my daughter doesn’t share details of the overnight shifts that she spends as a nurse in the ICU (Intensive Care Unit). Sometimes the care that she and other medical professionals give allow their patients, with God’s grace, to graduate from the ICU on the road to recovery. Other times, she is honored to tend with dignity to those losing the battle for life. Many of her patients are not awake and communicative; she often doesn’t get to uncover the unique individual  hidden behind the person in her charge.

Last week she did share a story. While the natural human emotions of medical professionals need to be controlled for them to do their job, one patient’s plight pierced through my daughter’s defenses. It was not the first time she cared for a young man dying from sickle cell anemia, and his fate upended her equilibrium.

In an anguished voice, she asked me, “Why don’t people get tested so that their children won’t die?” I understood the history behind her question. As a high school student, my daughter along with all her classmates (and students in most religious Jewish schools) underwent a blood screening test to reveal if they were carriers for certain illnesses that are prevalent in the Jewish community. The organization that runs the screening emerged from the pain of a rabbi, Joseph Ekstein, who watched, devastated, as four of his young children died from Tay Sachs disease. Wanting to spare others similar sorrow, in the 1980s he began promoting widespread genetic testing. Since then the organization that carries out his mission has expanded to test for an increasing number of fatal and debilitating recessive genetic diseases to which Jews are disproportionally disposed.

How does it work? The concept of testing high school students presupposes certain social norms. For this reason, religious high schools provide a natural platform. For the most part, these students belong to a culture that frowns on social dating. Down the road, many of them will meet their spouses through introductions by family and friends or through matchmakers. Even if they do meet someone at a social gathering or other venue, the expectation is that any incipient relationship hinges on getting to know one another with marriage as the aim. Furthermore, physical contact leading to out of wedlock pregnancies is not the norm; marriage and children go together.

Once tested, the students are not given any genetic information. Instead, they are given an identifying number. When they begin to court for marriage, ideally before ever even going out on a first date, they, or their parents, call a designated phone number with their own identifying code as well as the number of the person they are meeting. If neither or only one of the individuals is a carrier for one of the serious genetic diseases, the caller is blessed with wishes that the courtship goes well. If both individuals are carriers, the caller is advised not to pursue the meeting. Even if the couple has already met, calling at an early stage in the process means that while relinquishing the relationship may be disappointing, it is a small price to pay compared to the potential tragedy that could ensue.

Why am I writing about this? Sickle cell anemia is prevalent in both the African American and Hispanic communities. I read that the trait for it is the most common inherited blood disorder in the United States. I know that among my Musings’ readers there are pastors whose congregations include many Hispanic and African American families, as well as individuals from those communities. These churches often promote courtship rather than dating. Perhaps genetic testing is already encouraged; I don’t know. I do know that in the observant Jewish community it has become rare to hear about a baby being born with Tay Sachs. The testing has been wildly successful in eradicating this particular affliction. I write in the hope that sharing an experience from my community can help eliminate heartbreak for other groups.

 

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18 comments

Nancy Cole says:

I know this is an awesome thing for our youth. We are not Jewish, but my 2 younger daughters had a child by brothers, both have died, Josh was the first to be born with seizure syndrome, went into Cerebral Palsy after the DPT shot. he died at 7. His cousin, Leighann died at 4, she was born with the syndrome, her parents would not let her have any shots. Both my daughters do not have any children now, and with my knowledge of the seizure syndrome in the fathers’ family after the fact, neither should have had a child. It was a case of the 2 family lines coming together. It was very devastating to both girls as well as my husband and I. I cared for both those little children, bonded with them and loved them deeply. I think the testing and understanding would be one great piece of advise to any community, and culture. Bad enough we have so much coming at us through the air, food and water, God’s protection (Psalm 91) needs to be spoken over our children, grand and great grand children today, all the while. Just Sayin’ 🙂

Susan Lapin says:

What a tragic story, Nancy. I’m so sorry for what you and your family went through.

Leslie Dickerson says:

Susan, thank you so much for sharing this. This is indeed an eye opener. I need to seek the Lord for many things after reading this. You and Rabbi Daniel share such wisdom. I consider his wisdom much.

Karen Boswell says:

While to the faint of heart ….the trials of Job tells us…not much comfort EXCEPT the promises of God – WHO never changes

I AM that I AM

Lori says:

Your post is very interesting to me; I’d never heard of such a system within the Jewish community, and I agree that it is wise to strongly consider such testing. After our son started exhibiting some characteristics similar to my husband’s, we underwent testing (including genetic testing) to find that our family is a carrier of an extremely rare genetic disorder (they know of 20 families in North America but there are likely more). Thankfully “our” disorder isn’t life threatening but can be painful and, unfortunately, it is carried by a dominant gene. You can imagine the issues my husband and I have wrestled through regarding having more children and the prayers I pray for my affected family members as they seek wisdom regarding starting their own families. I can empathize and understand but am somewhat surprised at the idea that the lives of those suffering should somehow have been prevented to spare future pain. Even in suffering much purpose and joy can be found in the lives of those sufferers and in the lives of those who love them. I do recognize there is a significant difference between abortion (in which I’m certain you and I agree) and this matter but also caution wisdom in judgment over the decisions others make regarding their own families. (And I don’t think you nor your daughter are “judging” them.) I’m a believer in absolutes but know that the individual situation of each family warrants special consideration and as the possibility of genetic testing continues to grow, I am concerned regarding the ethical ramifications that may start to emerge as such testing may be encouraged / pushed from medical staff, insurance companies, etc. The development of genetic testing has been a blessing but can create some difficult ethical questions. Just offering another perspective. As always, I appreciate your intriguing posts and thank you for sharing your concern on this matter, Susan.

Susan Lapin says:

You are raising a very important point, Lori, which is the double-edged sword of medical breakthroughs. In the case of these genetic diseases, you are right that abortion would not be an option for religious Jews. The testing is not a statement at all that there isn’t purpose and love when someone suffers, but rather that marriage can be predicated on forethought and planning. If you can spare your child a fatal, debilitating disease by why not do so? There is no judgment whatsoever, rather a desire to spare pain. But, you are right that we are seeing science move in scary ways and like so much else in life, it can be used for good or evil.

marti macaluso says:

Thank you Susan for explaining these procedures and tests/ thoughtfully said-

Carl from South Carolina says:

I too presently work in Health Care, and this relates to 90 % of my patients. Am making copies to share with our Black and Hispanic brothers and sisters. Thx

Susan Lapin says:

My hope while writing this was that it would reach people such as you who could use it for good.

Rebecca Hullinger says:

We balance on a fine line here. So many positives but there are also so many negatives that could occur due to this type of testing. Do we play God or allow someone to play God for us? How long before the government and or insurance companies get involved and say you’re not allowed to have children or there’s a family history of cancer, so you are unanswerable, etc? My nephew was born with Cerebral Palsy due to placenta prevail and because my Sister’s bone structure made it impossible for her to have a baby without a c-section. The struggle for my nephew has been hard. But he is so happy and has touched so many lives. I can’t imagine life without him. What if genetic testing could have interfered with the birth of such people as Mozart, Winston Churchill, Abraham Lincoln, Fanny Crosby or Helen Keller? It’s really something to ponder. With every new invention there seems to be ways that they can be used in negative ways. One good example would be atomic energy. I love the issues that you and Rabbi Lapin tackle. So thought provoking. So I interesting.

Rebecca Hullinger says:

Insurable

Rebecca Hullinger says:

And that should have said placenta previa.

Lori says:

Rebecca, yours was a question we asked when we were considering children. Helen Keller and numerous others who have made their mark on our world would likely have been “prevented” had the technology been available. There are very few guarantees in this life but a couple of guarantees include certain pain and eventual death–neither of which genetic testing can improve upon re: final outcomes. I’ve come to rely upon God’s providence and sovereignty while also understanding that He’s given me knowledge and wisdom as I seek Him in these issues. I’m thankful for the mercy, grace, and forgiveness also guaranteed when I get it wrong.

Susan Lapin says:

I think there is a huge difference between genetic testing of a baby-in-womb with the idea of abortion should he/she not be perfect and taking steps to choosing a mate to avoid a real and known genetic problem.

Eileen Joyce says:

Hellen Keller’s infirmities were a result of a childhood disease ( scarlet fever, if I remember correctly).

Lori says:

I agree and am thankful for the testing I underwent with baby in utero which may have aided in determining the best mode of delivery for one of my children. (I’m not a part of the “quiverfull movement” either so my thoughts on this issue aren’t colored from that mindset.) I am mindful however that the mate God specifically chose for me also carries genetic abnormalities, which though serious, is less fatal than the genetic predisposition to a fallen nature, which none of us can avoid. God often turns man’s practical, “common sense” wisdom upside down and uses the weak to show His glory. Thank you again for raising awareness (and discussion!) of this issue, Susan.

Lynn says:

I’ve pondered submitting a reply to this musing. Ironic in the timing for me. Last week my daughter and son in law found out that their five month old son is being referred for genetic testing for a possible condition. I’ve looked up the condition. It will have certain ramifications, physical pain for him being one of them. My heart is heavy that this sweet little boy may have a special set of circumstances to live with that are not of the norm. This certain condition would be far preferable, I think, to many other genetic predisposition. I have two cousins who have had children with cystic fibrosis and another rare condition called Angelman syndrome. Both of these children died in their 20’s. Both were well loved and neither parents, now can conceive of their lives without these young people being part of those years. How the other siblings related to them, and learned to care for them, grew them into very special adults, who have an enormous amount of compassion for others. I can understand the desire to eliminate the headache of these genetic conditions because the heartache is great. When I was pregnant with my daughter, there were complications that came to light at 7.5 months. It was stressful. We were told we would never bring her home from the hospital. That experience strengthened my faith. Psalm 139:13-18 tells us that God knew us before we were born. He watched over us while we are being formed. Now, 30 plus years after my daughters birth, I am still in wonder of how God took that time and worked miracles in her and in my heart. I wouldn’t change a thing.
We aren’t guaranteed lives without hurt and heartache here on this earth. I guess I wouldn’t tell anyone to not have genetic testing but I would caution people to pray about it. Gods ways are not ours. That much I’m certain of! Our family is in prayer for our little boy. I’m not sure what will happen in his future but I know that as a family we will all be working together to pray for and to assist my daughter and son in law if their future holds challenges for them and for their child.

Susan Lapin says:

Lynn, I pray that you and your family feel God’s closeness as you go through this process of discovery. I have known many special families who also cherished children born with conditions that posed great challenges. Their families did grow from the experience and they wouldn’t ‘trade’ their challenge for any other. Of course, there are other families who were shattered by facing heartbreaking challenges. Enjoying is the wrong word, but I am appreciating everything that is being shared in the comments. From my perspective, I thank God that since there is a fatal condition that was becoming so prevalent in parts of the Jewish community, I am tremendously grateful that we could screen for it, not once a pregnancy ensued, not even once there was a marriage, but rather in helping us to decide if our children should be introduced to someone. That didn’t mean that they were assured healthy children, but it saved them from a known tragedy. Like other scientific discoveries, genetic testing can used for blessing or curse. In my children’s cases, I believe it was a blessing.

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