"You have that glow," my husband said, as he so often notes when I am pregnant. I love being pregnant. The joy of being continually creative, even while I sleep, permeates every part of me.
This was my third pregnancy and it was going blissfully well, with my typical nausea and inability to eat meat, but not much worse. My past pregnancies had been easy, low risk, and just wonderful, and I wasn't expecting anything different. I suppose nobody does.
How things can change in an instant. My kids woke up early one morning and were crying in their cribs. Lying in bed bemoaning my early risers, I suddenly felt a huge gush of blood; then came several more. I stumbled out of bed and got dressed just as my husband was returning from shul. "I'm bleeding. I think we need to go to the hospital." Once the kids were up and dressed, we decided instead to go to the local clinic where we were squeezed in to see a doctor.
As we waited for an ultrasound, I mentally prepared myself to hear that the fetus was not alive. "There is a heartbeat," the doctor said. She explained that there was no cause for the bleeding that she could see on the ultrasound. Her advice was to rest, pray and schedule a follow up ultrasound for the next week.
We came back home and made preparations so I could rest up as much as possible. My husband would do the laundry and grocery shopping, and I got cleaning help and looked into afternoon babysitters. We discussed going back to the States to be near our parents. I was only in my 10th week; 30 more to go. But we would do whatever was necessary to ensure a healthy baby and a healthy birth.
After a long week of sitting on the couch, we went for the follow up ultrasound, expecting everything would be fine. It wasn't. "There's some fluid around the sac that isn't supposed to be there," the technician told us. She arranged for us to come back the next day to see the ultrasound doctor. I noticed she had written in Hebrew something about the structure of the head not being proper.
"Did you see this?" I asked my husband.
"She just means she can't see the shape because of the extra fluid," was his answer. I nervously accepted his reply.
We arrived the next day to see the doctor. I studied the poster on the wall with pictures of the fetus at different weeks of a pregnancy. At 11 weeks, the fetus already looks like a baby. It's less than five inches long, and has a face, hands, and legs. I rubbed my own tummy thinking that's what my baby looked like.
Just like that. I had been carrying life, and now I was carrying death.
The doctor spent a while examining the ultrasound and then said abruptly, "There is a problem." The words no pregnant woman ever wants to hear. "There is a hole in the skull, and the brain is not in the skull. This baby is not going to live, and you should terminate your pregnancy."
Just like that. I had been carrying life, and now I was carrying death. The tears started to pour.
"How sure are you?" my husband asked.
"Ninety percent," he answered.
He told us to schedule a D&C. I waited outside while they finished up some paperwork, trying to make sense of everything, but nothing made sense. All I wanted to do was to get it over and done with. The thought of carrying death was too overwhelming for me to handle. I sat there crying and rubbing my tummy, agonizing over the fact that this baby, whose heart was beating and was clinging to life, was going to die. At the same time, I was dealing with my not-yet-one-year-old in the stroller, who was whining and wanting attention.
We consulted with our rabbi who said we should wait with the D&C and get a second opinion from an expert. We had to wait until Monday to see my ob-gyn (it was Thursday.) This was going to be a long weekend.
When we got home, I noticed that the doctor had written "encephalocele" on the printout of the ultrasound as the diagnosis. Encephalocele is one of three neural tube defects, the best known of which is spina bifida. The neural tube in a fetus is what eventually develops into the central nervous system, with the brain at the top descending into the spinal cord. Spina bifida is a condition which occurs when there is an incomplete closure of the spinal cord, and a sac develops at the point of closure outside of the body. This is one of the reasons pregnant women are instructed to take high doses of folic acid, which has been shown to help prevent this terrible birth defect.
The second neural tube defect is called anencephaly and occurs when the skull fails to close, and the brain doesn't develop properly. These babies die within hours or days of birth.
An encephalocele is when the skull doesn't close completely, and a sac develops outside of the head containing fluid and often brain tissue. Depending on how much brain tissue is in the sac, the baby may or may not live, or will be retarded at birth.
The next few days were very difficult as we began to envision giving birth to this baby that would probably die in my arms. What would we tell people when I started to show? "B'sha'a tova, that is so exciting!" they would say. How would I answer? I just kept thinking that if this is what the Almighty wants from us, then this is what we are going to do. It was comforting to know that it was all in God's hands.
I was very weak and tired, more so than I usually am while pregnant, and I realized that it was probably because the baby was taking everything out of me in order to survive.
We finally met Dr. Nagari, a leading physician, who had a 3-d ultrasound machine. As he examined the baby, I watched its little body all curled up, moving around. The doctor sat down with my husband and me, and I was trembling with anxiety. "This baby has anencephaly," the doctor began. "He is not going to live."
I couldn't believe my ears. "How sure are you that he is not going to live past 30 days?" we asked.
"100% sure. This baby can not live."
When faced with this terrible prognosis, some courageous women choose to carry the baby in spite of what they know the outcome will be. I am not one of them.
As odd as it may sound, a tremendous relief washed over me. Apparently the baby had a form of this birth defect where the brain is not in the skull and was therefore disintegrating in the amniotic fluid.
When faced with this terrible prognosis, some courageous women choose to carry the baby in spite of what they know the outcome will be. I am not one of them. With counsel from our rabbi, we chose to save my limited strength to care for my children who are living, who depend on me, who need me to be capable and loving, who need me to help them develop to reach their highest potential.
We don't know why we were chosen for this test. But there have been obvious results. I feel tremendous compassion for all people in difficult situations. I view my children, more than ever before, as an amazing gift from God. I realize how much we are not in control of what happens in this world, and that the only thing in our power is to choose to be good. Nothing in life is a given, and we must be so thankful for all the good that the Almighty, who wants the best for us, bestows upon us. The good far outweighs the hardships that are minuscule in comparison.
We will not forget this baby, and I will forever carry its memory with me. I know that the soul of my baby will come back to me when the Mashiach comes, and we will bask together in the glow of God's absolute warmth and love.
(20) Anonymous, October 4, 2008 1:04 PM
thank you
Thank you so much for sharing your story-- 2 weeks ago Dr. Nagari diagnosed a major birth defect that was then confirmed by amnio and we terminated the pregnancy after receiving a psak from several rabbanim-- your story helped me feel much less alone-- just to help others-- a therapist helped me see that this was the ultimate act of love a mother could do for her child-- to save it from a life of pain and disability-- I keep trying to remind myself of that
(19) sara, August 9, 2008 10:01 PM
When i started to read this story I felt like I was the one who had written it! 2 yrs ago in my 20th week i was sent to Dr. Nadjari by my rav to get a second opinion. Before he started the ultrasound he told me and my husband that whatever Hashem has planned is for the good and that everything is ein od milvado...then he started the ultrasound and was quiet...then I took one look at his face and knew that it wasnt good. My baby too had encephalocele...It didnt really make any sence to me since the pregnancy was totally normal and the baby wouldnt stop kicking. But the doctor told us that the baby had no chance of living and that we should speak to our rav what to do!..Needless to say my husband and I were both depressed when we were told to terminate the baby. 5 weeks later i terminated the pregnancy and went through 24 hours of hard labor since I was already in my 26th week...7 weeeks later i became pregnant agian and gave birth to a beautiful HEALTHY baby girl.That was 9 months ago and b'h I am now 5 months pregnant...Back then I thought that I would never be able to move on but time really does heal and Hashem has been blessing me ever since!...it should just be the same for you!
(18) Anonymous, August 7, 2008 9:55 PM
true blessings
Our children are always blessings from Hashem. In these days before Tisha b'Av, may it be our last, could I make a request. Could we please stop calling our children "delicious". I so often hear this word used, and i always cringe. May we never know the sorrow of what happend in the time of the Churban, of what we read about in Eicha.
May our children always be a source of true Yiddishe nachas, but,please,please Ribbono Shel Olom, may they never be delicious. An easy and meaningful fast to all.
(17) ESTHER MATMON, August 7, 2008 9:05 PM
YOU ARE NOT ALONE
I WOULD LIKE TO THANK YOU FOR SHARING THIS EMOTIONAL AND UNEASY EXPERIENCE YOU HAD. I CAN TOTALLY RELATE TO YOU. AFTER YEARS OF TRYING, I FINALLY GOT PREGNANT, THE BABY HAD A HEARTBEAT, THERE WAS SO MUCH JOY, HOPE AND EXPECTATION, UNTIL THE BABY WAS ABOUT 2 MONTHS OF GESTATIONAL AGE, WHEN THERE WAS NO MORE HEARTBEAT, AND I ALSO HAD TO HAVE D&C. IT WAS A VERY CHALLENGING TIME. IT WAS SIMPLY DEVASTATING UNTIL MY RABBI'S WIFE SENT ME SOME WORDS OF ENCOURAGEMENT, SHE WROTE:"IT SAYS THAT HAKADOSH BARUCHU HAS NESHAMOS UP IN SHAMAYIM THAT NEED RECTIFICATION FOR JUST FEW MONTHS/WEEKS/HOURS AND HE CHOSES THE MOMMY FOR THIS HOLY NESHAMA TO RECTIFY ITS TIKKUN, WHICH WOMB TO PLACE IT IN. IT IS A TREMENDOUS CHESSED TO DO IT, WE ARE LIKE A SEFER TORA COVER THAT CARRIES SEFER TORAH, HASHEM VIEWS US HIGHLY, AND IN 120 YEARS THAT NESHAMA WILL COME AND SAY"MOMMY" TO YOU AND TO ME. STRENGTHEN YOURSELF FOR YOUR EARTHLY KIDS, MAY HASHEM BLESS YOU WITH MANY HEALTHY MORE. AMEN!
(16) Anonymous, August 5, 2008 11:58 AM
Thank you so much
I thank you from the bottom of my heart for having written this article. It gives hope and courage to face the difficulties of life. God bless you and your family.
(15) Anonymous, August 5, 2008 11:44 AM
I lost one too
A month ago, I gave birth to a stillborn after 30 weeks. The cause was discovered to be a placental abruption. Needless to say, it hurt so much. But my husband and I slowly came to the realization that we had a perfect son. His neshama was so holy that he couldn't even live in this gashmius world. May Hashem give you the courage to recognize the "hidden brocha" you were given, and may you have many healthy children.
(14) ruth housman, August 5, 2008 5:26 AM
what might have been
I feel the tears in this loving article. How hard it must be to carry a child and to learn this child cannot survive. I do believe as you do, that it is the soul that is eternal and yes, the baby will come back to you and that love is always the answer and how you do love and mourn!
(13) Baila, August 5, 2008 3:44 AM
Its not more courageous
Thank you for writing this article. This is my story almost exactly, even the same doctor! I lost my third to anencephaly three months ago. After speaking to many Rabbonim here in Yerushalim we were made to understand that the more courageous act is to terminate the preganancy and listen to the Gedolim. Ending the pregnancy for me was so traumatic. I was already 18 weeks when we found out and felt the baby kicking inside me. I wanted to carry the baby until the end and let it die a natural death. But this the psak we got and this is what we had to do. Although I knew theoretically that this child could not live, for me it felt like killing an unborn child. What you did was very couragous. Its not easy to accept a psak like this with Simcha. Hashem has given you the strength to see His kindness and to give Chizuk to many people by writing about this. There is so much Chesed in every blow he gives us.
(12) carol wasserstein, August 4, 2008 5:11 PM
you are brave!!!!!!!
I feel for you and your family. I too had a miscarriage at 11 weeks. I have 3 grown children now and 3 grandchildren. Baruch Hashem. love, carol
(11) Yocheved, August 4, 2008 10:51 AM
Your decision must have been so terribly difficult for you. It took great bravery and emunah, and love for ALL of your children. I have B"H 3 wonderful children, and can feel your pain. May you find the comfort you are seeking.
(10) Anonymous, August 4, 2008 10:00 AM
Lost grandchild
My daughter in law lost her baby at 23 weeks. There was no explanation but I gained great comfort knowing that his soul did not need to be born just carried in his mother's womb for as long as was needed. Baruch Hashem we have two beautiful grandchildren but I still mourn the third that was not to be. May you go on to have more beautiful little ones in good health.
(9) anonymous, August 4, 2008 8:58 AM
My daughter had your exact experience
The only difference was that it was her first pregnancy. It was very difficult for her since her younger sister had one child and was pregnant with her second. She was supposed to have the second grandchild, but that was not to be. She had her D & C but began to hemmorhage several days later. B"H they were able to stop the bleeding and she didn't need a hysterectomy as we feared and she now has two healthy, brilliant, gorgeous children. As difficult as this was for you, at least you have two children whereas my daughter had none at the time and feared that she might never have a child. Bezrat Hashem, you will have many more healthy children as will she.
(8) Batsheva, August 4, 2008 3:41 AM
to anonymous, lost life
The Jewish soul is present from the moment of conception. These souls will be resurrected just like all other souls. Every soul has a mission to fulfill in this world, some take 70 years, others more, others less. In order to reach the world to come, all souls must pass through this world, even if only in the mother's womb. Every woman who carries a baby and loses it, has performed a tremendous kindness with her child's soul, allowing it to pass from the "heichal haneshamos" the realm of the soul, into this world and consequently into the next world. You did not carry those precious babies in vain, and you will be reunited in the future. I found this to be a tremendous source of comfort after my first pregnancy ended in a stillbirth. May you know only joy and happiness in the future.
(7) Anonymous, August 3, 2008 10:12 PM
Wow!
I hear words of comfort combined with Emunah and Bitachon. May you know no more Tza'ar.
(6) S Rosenblum, August 3, 2008 8:13 PM
heartbreaking
My heart goes out to both of you who have endured such a challenge. My older child was born at 3 1/2 lbs, 6 weeks early due to toxemia and nearly lost her. I feel the anxiety and fear that you went through. Hashem should give you the strength to raise your family and never know any pain.
(5) Anonymous, August 3, 2008 6:05 PM
lost life
I have had several miscarriages, more than one D&C. I was taught that the Jewish soul enters with the first breath so I don't understand the statement about "soul of my baby will come back to me...." We never forget our lost babies and I hope G-d blesses you with more.
(4) orly, August 3, 2008 2:34 PM
wow, what a story
its good to know that with your faith in Hashem you are able to move on and accept hardships with joy
(3) Anonymous, August 3, 2008 1:41 PM
I empathize
I lost my third and fourth pregnancies to unexplained miscarriages, but went on to complete three more healthy pregnancies, so I wish you no worse. I have to say I do not understand carrying a baby to term when there is no chance of survival. I completely agree with your reasoning of preserving your physical and emotional strength for the kids you have.
May your future pregnancies be healthy ones.
(2) Anonymous, August 3, 2008 1:27 PM
you're very strong
wow
this story really hit a soft spot
I'm now also in my third month of pregnancy, and I'll been experiencing bleeding
B"H there is a heartbeat, but MY heart keeps telling me that maybe something is wrong.
The doctor is on top of it, and I have another ultrasound later this week bez"H.
your article just gives the strength that one is not alone, there is a purpose, and even if the news is what we would concider bad Hashem is the all knowing, and bestows only good.
May we be zoche to greet the masiach this Tisha B'Av bezras Hashem
(1) annie lass, August 3, 2008 10:48 AM
clinging to life
this is very moving. The loss of life is the worst experience imaginable for a parent, hope dwindling to despair in an instant. Ashem has endowed you with the courage you need for this test, and my heart goes out to you.