Kidney to Spare?
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Kidney to Spare?

Kidney to Spare?

Do we need to experience pain ourselves before we can really understand the pain of others?

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I saw the post on Facebook. A friend wrote:

This is a note about a little girl who needs a kidney donation. I am posting all the relevant information in the comment for anyone who is interested in helping or knows of someone who can.

It would have been easy to skim over the post with a quick, Oy, that is so sad, but I certainly can’t help. After all, I’m a mother of four young children, have a full time job, and a very busy life.

Three years ago, I would have done just that. But then I went through an experience that changed my perspective.

The Scary Ultrasound

In a routine pregnancy test, confirmed by a hurriedly-scheduled amniocentesis, it was discovered that my baby’s AFP (alpha-fetal protein) was extremely high. This can be a sign of spina bifida, or other diseases where some part of the baby’s body is not closed, as it should be. Sometimes these diseases can even be corrected by surgery in-utero.

The genetics department of my local hospital quickly scheduled me for a detailed ultra-sound to locate the source of the issue. The ultra-sound showed a normal, healthy 20-week old baby boy. Great news! we thought.

But the geneticists thought otherwise.

With the AFP as high as it was, there must be some reason. If the reason was not an open wound, then it was probably related to a kidney disease, congenital nephrosis. We were told that it was very likely that our son would be born with severely impaired kidney function, would suffer greatly, and have a very short life. It was recommended that we terminate the pregnancy as soon as possible.

But we knew that terminating the pregnancy, certainly in a situation where there is no definitive diagnosis, was not permissible according to Jewish law.

My husband and I drove home from the hospital quietly, picked up our kids from school, and asked a friend to watch them so that we could have some time alone to digest the news.

Then we cried. I asked my husband how we could bring so much suffering upon a young child and upon our whole family. He wisely responded that we were not making the decision, the Almighty was.

We started to research the medical situation and made appointments to speak with an expert geneticist and kidney doctor (nephrologist).

By the time we went to see the expert geneticist, my husband’s research had produced a glimmer of hope. He learned that it was possible that the high level of AFP was caused by the baby being a carrier for a kidney disease that he would not actually have. The geneticist confirmed that possibility and gave us another feasible option as well. He also recommended that I follow up with additional blood tests to see if the AFP level would go down. If the level went down, it would indicate that the baby probably did not have the kidney disease.

The kidney doctor spoke to us about the worst-case scenario of a child who is born with congenital nephrosis. She told us that they know how to manage the disease much better than they used to and that it does not have to be fatal. With proper care, the child can survive until he is old enough to have a kidney transplant, and then live a relatively normal life.

We breathed a sigh of relief. Even in the worst-case scenario, there was hope that we could get through this with a child who would be able to survive and flourish.

A Whopper

Thank God further blood tests did seem to show improved AFP levels. We continued to pray and hope that our baby would be healthy, while worrying that he wouldn’t be.

I went into labor at the end of my 41st week and, thank God gave birth to a 9.5 lb baby who seemed perfectly healthy. He was the exact opposite of the small sickly baby who would have been expected if he had a kidney disease.

Nevertheless, the worry was not totally gone and we waited nervously for the results of blood tests, urine tests, and an ultrasound of the two-day-old kidneys.

Thank God the tests looked fine and the worry slowly dissipated. Until he was one year old, we still did a test periodically to make sure he was healthy.


We named our baby Itiel, meaning “God is with me,” as we certainly felt that God was with us and with him throughout the ordeal of my pregnancy.

The experience of having a child who was almost sick gave me a new level of empathy towards families who suffer with childhood illnesses. While I was pregnant with Itiel, I prayed that God would give me this empathy without making me go through the illness itself.

Maybe that is why I can’t stop thinking about the sick girl from Jerusalem who desperately needs a kidney to save her and give her a chance for a normal life.

I emailed the address provided, took a simple blood test and coordinated with a messenger who brought the blood sample to hospital for testing. Then I waited anxiously for the response.

Today I learned that I am not compatible to donate a kidney to Sarah.

I decided to write this article in the hope that maybe someone who is compatible will read it and decide to get tested. Maybe you have experienced an illness or tragedy that helps you understand what Sarah’s family is going through.

Or maybe you are thankful that you have not been through such pain, and just want to see if you can save a girl’s life.

Please pray for Sarah bat Hadassah Esther. She needs a kidney from someone who is blood type A or O. Potential donors can be tested in Israel or the United States through a simple blood test. Being tested does not obligate you. For information on being tested to see if you are a match, email shir999888@gmail.com

Visit http://www.kilya.org.il/en/ for more information on kidney donation.

Published: November 16, 2013


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Visitor Comments: 12

(8) David Koster, November 20, 2013 4:08 AM

I gave a kidney to a stranger

On June 25, 2003, I gave one of my kidneys to a total stranger. It was the most wonderful experience of my life!!! Thank G-d, I have been able to convince several other people to do the same. If you would like to speak to me about this experience, please feel free to contact me at kidneygiver@aol.com. I will give you all the information to make an informed decision to determine if this is something that you may want to do. However, I most point out that you do not have to have the same blood type as the recipient. There is what is known as the kidney swap program. Contact the National Kidney Registry at 800-936-1627 and tell them that you are willing to donate one of your kidneys to anyone on their list who needs a kidney on the condition that they find a donor who will give a kidney to the one mentioned in the above article. Also, many hospitals have similar programs. Donate your kidney. You will never regret it.

(7) Anonymous, November 19, 2013 10:29 AM

CheckHalacha!

A kidney can be donated while alive and well. My friend did, giving a new life to a person & their grateful family. Research if autopsy and being an organ donor after death is permitted to us. It just is not! Refuah Shelaima!!

(6) Patti, November 19, 2013 4:00 AM

I work in a dialysis center.

Most commonly, kidneys for transplant generally are either cadaver kidneys (from a deceased donor) or from a relative or friend who is donating one of their kidneys to a specific transplant recipient. It is the anonymous altruistic donors that amaze me the most. They donate a kidney to go to anyone who on the waiting list. The best match is then found and the surgeries scheduled. There are thousands of Sarahs out there who are waiting for the gift that will change their lives. For most, donating a live kidney is not an option, but anyone can make preparations to donate upon death. If you have not become a registered donor, please do so. At the very least, talk with your loved ones if you want to donate upon death, so that they can let the doctors know it was your wish to be a donor.

(5) Beverly Kurtin, November 18, 2013 9:10 PM

Wish I could

Let me answer the question at the top of this first. Do we need to experience pain ourselves before we can really understand the pain of others? Yes. However, we need to understand that if you have pain IT IS YOUR PAIN and cannot be compared to another person's pain.
I have been in intractable pain for the past several years. Nothing can alleviate it, however, when people try to tell me that they have pain but it is nothing like mine, I tell them not to minimize their pain--it is THEIR pain.
My heart goes out to everyone who needs a new kidney. Thanks to the medical marvels we have today, they can stay alive, but not indefinitely and the side-effects of dialysis can really ruin someone's day.
The problem, of course, is that people do not want to give their organs at death. Judaism permits donating organs because it will save a life and that is the ultimate gift that a person can to another.
If I had my druthers, it would be mandatory for people to have to donate their organs, but there are some people whose religion says that they have to be buried whole so when they're resurrected, their organs will be with them. I find myself wondering what they are thinking. Their organs with the rest of their bodies will disappear leaving bones.

(4) Anonymous, November 18, 2013 5:48 PM

All to familiar story.

Our granddaughter was also born with bilateral kidney disease. were told multiple times haw grave her condition was and that she would not survive until the age of 2 1/2 to 3 when a child is big enough for a transplant. Dialysis takes a devastating toll on a newborn. Many miracles took place after her birth. Her kidney function was just 16% when she came home at 3 months of age. The doctors expecting them to fail within the next few months. But over the course of the next 2 1/2 years ( with special diet, medication and very close monitoring) her kidney function never changed. Last year my son in law had the merit of donating one of his kidney's to his daughters. With gratitude to the almighty, last week, our granddaughter celebrated her 1 year post transplant anniversary.

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