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Eight Days with Our Baby

Eight Days with Our Baby

Born with terminal kidney disfunction, each moment with him was precious.

by

The following true account was related to me for I, too, had undergone a similar experience. Losing a child is something that one never, ever forgets.

It was almost as if my sister had a premonition that something was not right. That morning, when I mentioned to her that I had an appointment with my obstetrician, she asked me if my husband would be accompanying me. I thought it was a strange question. This was not my first pregnancy. I knew the ropes. I certainly didn't need emotional support.

The doctor's checkup seemed to take longer than usual, and when she completed the exam, she uncomfortably cleared her throat and told me that the baby had serious medical issues. I'm usually a very stoic person, but when the doctor said, "Your baby is probably not compatible with life," I burst into tears. And then I called my husband.

Things like this aren't supposed to happen to young couples like us!

The technician brought me to what's called the "Quiet Room" – a small room to the side, with a sofa and a prominently displayed box of tissues. I was numb. Things like this aren't supposed to happen to young couples like us! We'd had our ups and downs like everyone else, but never a challenge of this magnitude. We left the doctor's office in a daze. Although in reality nothing had changed, we were now aware that there was an ominous gray cloud on the horizon, and we were petrified.

Over the next weeks, I underwent many different tests. They all verified that our baby's kidneys were not functioning. The prognosis was unanimous: Without kidneys to rid its blood of toxic waste, our baby would die shortly after birth.

My husband and I chose not to tell anyone, including our families and closest friends. At night, when the house was quiet, we would stay up half the night, sharing our worries. We supported each other as our initial shock changed to grief, and finally, to acceptance. We discussed every aspect of the challenge – from how and when to break the news to the children, and questions of Jewish law which we discussed with our rabbi.

I put on a good show, pretending to be a radiant young mother looking forward to welcoming a new addition to the family. Each morning before leaving the house to drive the children to school, I would carefully spend a few minutes making sure that my clothes were just right. To everyone else, I appeared to have not a care in the world. No one could have guessed what was going on inside. But alone in the car, I would suddenly burst into tears. To conceal my red rimmed eyes, I started wearing sunglasses, even on dark, stormy days.

Eventually, I decided to confide in a friend, Miri, who had gone through a similar challenge. She was amazingly supportive. After that, a day didn't go by without her getting in touch with me. Her friendship and support gave me tremendous strength – just knowing that she was always there for me made a huge difference in my life.

Who Will Live, Who Will Die

Later on in the pregnancy, a new series of tests showed that the baby had minimal kidney function, which gave us hope for his survival. "But," the doctors warned us, "if the baby does survive, he will need multiple surgeries and hours of intense therapy to be able to function properly."

Our heads were spinning. All of a sudden, the ominous cloud in the horizon had changed form. We had come to terms with the idea of returning home with empty hands. Now we had to accept the possibility that I'd be bringing home a very sick baby and that the pattern of our lives would change forever. Although it was a ray of hope – our baby might live and we were ecstatic – we had prepared ourselves for one reality, and now that it had changed, we had to adjust our way of thinking.

During the High Holidays, every prayer took on new intensity.

I was due to give birth around the time of the High Holidays. During the month prior, I prepared dozens of precooked meals and stocked up on staples. I felt as if I was preparing for a war. Eighteen chicken rolls, ten cakes, three containers of mushroom sauce, two trays of corned beef. There was simply no more room in the freezer.

Rosh Hashanah was an amazing experience. Every act and every prayer took on a new intensity. As I lit the Yom Tov candles, I wondered where I'd be the following week. Life, death – it was all intertwined, all so vivid. “Who will live, who will die," as we say in the prayers. The words were so real. As the cloud drew closer, I knew that whatever happened, I would be able to cope. God is the perfect Judge.

The night before I was due to give birth, we sat down our two eldest children and told them that I was going to have the baby tomorrow, but it is likely the baby will be very sick and may not even survive. It was heart-wrenching to watch their bitter disappointment, but we did our best to explain that although we cannot understand everything, we know that God does everything for the best.

Stab in the Heart

During the birth, my husband spoke for both of us when he said, "I feel like we're in a courtroom and the sentence is about to be handed down." After the baby was born, when the team of six neonatal specialists entered the room, I burst into tears. With their presence, I couldn't delude myself into imagining that everything was normal.

The baby – my sweet little child – cried heartily at birth. He appeared to be so incredibly perfect; so alert. I was sure that the doctors had made a mistake or that it had all been nothing more than a bad dream. The doctor handed him to me and for a few precious seconds, I cuddled my newborn. Then they whisked him away.

After a battery of tests, the doctors confirmed that there was little or no kidney function. Without functioning kidneys, the wastes would slowly poison his body. The doctors predicted that he would die within a few days.

It was like a stab in the heart. I so much wanted to take my baby home.

He was totally in the Almighty’s hands.

Because we knew that our time was so limited, we wanted to bond with our son as much as possible; to convey our intense love to this precious soul that we had been granted for such a short time. I spent the next few days cuddling my beautiful son. His tiny hand would grasp my finger while he gazed intensely into my eyes with the otherworldly gaze of a newborn. It was a very powerful time for all of us. Medically, there was nothing we could do for him. He was totally in the Almighty’s hands, and that, too, was comforting.

I wanted to enjoy every moment with the baby. Looking back, I will know that I made the most of it. And really, all the people we care about aren't here forever. We have to appreciate whatever time we have. Amidst the hardship, there is what to enjoy. He really is beautiful.

We named our baby Refoel, the traditional angel of healing. Now he had an identity, and a name that we and others could pray for.

Our parents and siblings looked after our other children. They shuttled back and forth from the hospital all week to bring us clothing and food or just to be there with us at our baby's bedside at this trying time. We decided to let our two eldest children come and see the baby. They each got a turn to hold and kiss him. It was very therapeutic for them.

My husband did not leave me the entire week. Then, after five days, on the eve of Yom Kippur, he left the hospital to get organized for Yom Tov. While he was gone, the doctor informed me that according to that morning's blood test, Refoel had only a few more hours to live. I immediately phoned my husband. He rushed back to the hospital. Together with our baby, we were transferred to a "quiet room," which had everything we might need to feel comfortable during this very difficult, yet incredibly spiritual time.

The nurses and entire staff were amazing; so kind and compassionate. And despite the doctor's prognosis, the baby survived the day.

A few hours before Yom Kippur, our parents came in to the hospital to visit. The proud grandparents gave the baby a blessing. There was not a dry eye in the room.

The nurses managed to find two candles for me to light. Late that afternoon, as I lit the candles to usher in Yom Kippur, I couldn't help but wonder which would survive longer – my baby or the candles?

My husband remained with me over Yom Kippur, saying the Yom Kippur prayers in our private room. When he finished Kol Nidrei, he stood in his tallis and recited the blessing of She’hecheyanu, thanking He Who has sustained us to this day.

Between prayers, my husband sang to the baby. We spoke to Refoel and asked him to pray for people in need of salvation when he returns to the World of Truth. The day was long, but we were just happy to spend every extra hour we could with our baby. We watched the sun set, and as we prayed the closing Yom Kippur prayer, Neilah, the atmosphere was surreal.

Yom Kippur was over and Refoel was still hanging onto life. I hadn't slept in 36 hours.

We bathed the baby and dressed him. The nurses removed the oxygen, which made it easier to cuddle him. The doctors can't predict. I was focused on enjoying every minute, and when his time is up, it's up.

I was getting more attached to the baby every minute, and scared of letting go.

In the end, our baby died peacefully in my arms. He just stopped breathing and after a few long minutes, it became obvious that he was gone. There was no panic, no gasping theatrics, just a realization that he was no longer with us. We called the Chevrah Kaddisha, the Jewish burial society. The man who came was crying as he took the baby from my arms. Then he called one of the doctors on duty to issue the death certificate. The doctor was very young and inexperienced and this was obviously the first time he had been asked to verify a death. He was shaking, and we tried our best to calm him.

It was over. We packed up our belongings and returned home.

It was one o'clock in the morning. The streets were dark and empty. My arms were empty, and I felt the emptiness with a painful intensity. Yet I was at peace with what had happened. I knew that there was a reason that this soul had come down to this world, and we felt that it was a merit to have given Refoel this opportunity.

But still, the pain was wrenching.

I cried myself to sleep.

The next day my cleaning lady came and she couldn't stop crying. She came all excited, with a beautiful baby present. I probably should have let her know ahead of time.

Our baby was given a Bris prior to burial, so that he would be a complete Jew upon meeting his Creator.

After one week had passed, it became much harder for me, with everyone going on with their normal lives. I was numb for the first week, but by now the pain was even stronger. I used half a box of tissues while looking at Refoel’s photo album and my eyes got all puffy. Definitely a sunglasses day...

After the baby died, my husband asked me, "If you could, would you just erase the last few months of your life?"

My answer was unequivocal: "Definitely not." As challenging as the experience was, we grew tremendously from the ordeal.

The entire experience was all so surreal: a little soul coming down to the world for one week, meriting to keep Shabbos and Yom Kippur, and then to have his Bris and be buried on the eighth day. I have no doubt that Refoel, z"l, accomplished whatever he was sent here to do.

I am happy to be contacted by others going through similar experiences. You are welcome to email yomkippurbaby@gmail.com.

Published: May 5, 2012


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Visitor Comments: 31

(25) Roizy, May 13, 2012 3:57 PM

real inspiration to breaved parents

dr norman blumanthal has read this story to parents of children who passed away in the young age at a Camp Simcha Shabbaton of Project Chai and we were sobbing because we all can feel and understand what these parent went through. Hashem should grant us coping skill to deal with real life challanges follow smileroizy on twitter.

(24) Esther, May 12, 2012 9:34 PM

Thank you!.

I feel so greatly for you. I have two grandsons, bot have the same terminal disease, each time they require a medical procedure to extend their life, the percentages increase that they just won't wake up. it is like going through loss each time. the little one is now almost 12 and has had 26 procedures to help him eat and breathe, and eliminate wastes. We came very close two years ago, he didn't :wake up" for 6 hours after surgery, I would never wish such pain on anyone, no matter how much they had hurt me or mine. the loss of one so small and precious is never easy. The older one died before his fourth birthday, just after his little brother was diagnosed. Hashim brought these two little angels into our lives for a very important reason I am sure, the lessons learned from them are ingrained deeply and forever.

(23) esther, May 11, 2012 5:16 AM

you are brave and strong. thank you for sharing this- something so deep and painful. your clarity and connection is inspiring.May Hashem give you comfort among the mourners of tzion and may refoel be an advocate for your family and all klal yisrael.

(22) Anonymous, May 11, 2012 3:35 AM

very inspiring

This was published in the Binah magazine and when I read it I almost cried. It was so good that I decided to read it again when I saw this was the same article I had read 2 weeks before. I don't know how people have such strength and emunah in Hashem to be able to pass such a hard test. I am in awe of these people and those who went through similar hardship. Hashem should bless you.

(21) Roberta, May 10, 2012 11:27 PM

Thank you

Thank you for showing me a side of mourning that brings honor and integrity to our world. You give all of us a model of acting on faith. Your son's life is our lesson. Thank you for this gift.

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