My Miracle Child by Rachael Konigsberg (Chanukah Semifinalist #5)
We’d been married and living in Israel for two years when I got pregnant. We had moved far from our families so we knew we’d have to handle things alone. Naively, we thought we were prepared. We took a Lamaze childbirth education class and practiced our breathing and relaxation techniques. We read many books and articles on natural childbirth and childrearing. But all the well-intended planning in the world fell short of preparing us for what we were about to experience.
Twelve hours after Chava’s birth it was discovered that she needed extra oxygen. The doctors started her on a respirator while searching for reasons why she needed it. She remained in the Neonatal Intensive Care Unit (NICU) at a Jerusalem hospital for eight long weeks. None of the tests accurately determined what she was suffering from.
My first lesson in coping was dealing with an unusual form of mothering. Chava was born by Cesarean operation and was placed in the NICU shortly after her birth. I was recuperating from general anesthesia on a different floor, which meant I could not see her right away after waking up from the surgery. It became intolerable to me that no one was bringing me my baby. I was extremely agitated, imagining the worst since the staff was not bringing me my baby. She had probably died! I got out of bed and collapsed on the floor! A wheelchair was suddenly found and I was wheeled up to the NICU. I met my baby amidst a flood of my tears and a pounding headache.
What I saw amazed me. She was a miniature person. Her face resembled my husband’s family and her features seemed perfect. She was cute! It was very easy to fall in love with her. These feelings overwhelmed me with a longing to hold her and stroke her in my arms but it was not meant to be for a number of long weeks. She needed that open incubator bed and all the machinery attached. The nurse reassured me that I would get stronger once I went home and could “relax”.
Five days after having a cesarean operation, I was released from the hospital and sent home. I was twenty-two years old and had never heard of a mother leaving the hospital before her baby. It was extremely traumatic for me to leave without her. It was the first of many traumas I experienced during that period of time.
Over the next few weeks, I became a nursing mother without a baby to breastfeed. I taught myself to express milk around the clock, waiting for the day that my baby would be allowed to receive it, at first by tube and then later to breastfeed directly. Considering she was my first baby, and there was no professional breastfeeding counselor in the hospital, this was no easy feat. In addition, I could not stay at home waiting for her to get well. I was very worried. My baby was attached to more than ten machines and was being kept alive through artificial means. There were breathing machines and feeding machines and monitors for her heart and her oxygen levels and her temperature and more that I can’t even remember. I visited her daily, going on two bus rides each direction. The traveling took a lot out of me and waiting by her bedside did not allow me to rest and recuperate my strength.
How did I cope? I remember the words of a very smart friend who had had a premature baby. At that time she was the only person I had met who had been through a similar situation: “Learn to take care of yourself. Be where you are with 100% of your being. If you are with your baby, think of nothing else, only your love for her and how much you
hope and pray that she will be alright and be able to come home. When you are home, concentrate on yourself and your husband. Be at home. Shower, eat, rest, and do things for yourself so that you can survive.”
These were wise words but not always easy to follow. My mind seemed to have a mind of its own. Worry became my constant companion. At the time I did not realize how much stress I was feeling from this ongoing situation.
Another coping skill for that challenging period was faith. Faith became an antidote to my constant worrying. My husband and I had become religious Jews by the time Chava was born. We had spent most of the two years before my daughter’s birth learning Torah. We were beginning to see the world through a new set of glasses, those of a person with complete belief in G-d.
At age two weeks the doctors called me in for a conference. My husband wasn’t with me that morning: “We have tried everything we know of to get her off the respirator. It is not clear to us why she is not breathing on her own. We believe she has a duct between her heart and lungs that did not close at birth. It is called ‘patent
aductus.'”
My baby was going into heart surgery and the doctors encouraged me to leave the hospital. As I set off towards home that evening, I remember feeling that I was not really bonded with this baby yet and I wondered if it would ever happen. I so much wanted to hold and cuddle her and feel that she was really mine! This baby had snuck out of my body while I slept. I realized that I did not know her and I was beginning to feel that I did not know myself either. I was all confused about how we were going to become a family.
My husband and I went to the Kotel and poured our hearts out for our baby and for ourselves.
We received a call when Chava’s surgery was over and returned to the hospital. We were unprepared for the sight that met us that night in the NICU. Our tiny baby had lost more weight. She was again attached to no less than ten machines with screens and beeps and swishes and whirls all around her. The lights were on 24 hours in the NICU in order to keep watch on the tiny, sick babies. We had learned by then that the open incubator beds nearest to the nurses station were for the sickest babies, and our baby was in that spot for the next six weeks until she was released.
As Chava’s condition stabilized, she was finally allowed to receive my milk in her feeding tube and towards the end of her stay in the NICU, she nursed on her own. And after eight long weeks, we were finally released from hospital and reunited at home with our baby.
We didn’t know what was wrong with our baby. From the time she came home from hospital, she did not develop at all. Worry became our constant companion. The constant worry took a lot out of us. We fought to remain optimistic and held onto the doctors’ words as they reassured us things would get better.
As the months passed, we realized that there was nothing that Chava learned to do without the help of therapy. Not rolling over or eye contact or smiling or clapping hands. She couldn’t even hold her head up! She spent the first two and a half years of her life crying, attempting to eat but not gaining weight and hardly sleeping.
Friends began hinting to us that Chava probably had cerebral palsy, an all-inclusive term to describe brain damage that occurs before, during or soon after the birth. Some children with C.P. have many of the same abilities as typical children but need therapy to get normal milestones to happen. Some children with C.P. have multiple disabilities such as problems with communication, mental retardation and seizures. I had known some children with cerebral palsy who could do almost anything but only after months of therapy. I had no reason to believe that our daughter was severely disabled.
Her first two years, she was constantly sick and we made the rounds to pediatricians and developmental specialists. The doctor’s advice to us was, “wait and see.” As I read these words I realize that all the signs pointed to multiple disabilities, but it was more comfortable for everyone to deny them, including myself.
We began with physical therapy, vision therapy and later added the Feldenkrais method. Developmental things began happening. She obviously needed this help. She learned many things that the doctors had given up on, such as seeing.
Chava behaved like a blind baby until she was two years and nine months old. That is when her sister, Shira, was born. Chava had received vision therapy from a teacher who came to our home. I used to put them in the crib together. As Shira learned to move, Chava followed her around with her eyes. Later she attempted to follow with
her body, in any way she knew how. At first that was sitting up and doing what we called, “bunny hopping.” Later she could roll and reach her sister anywhere in the room.
One of the first lessons we learned from Chava was not to take anything for granted! We learned to celebrate Chava’s smallest bits of development. She learned to smile at age five months. Her smile was not necessarily directed at us but generally rather at a song or a sound. We watched her other senses grow stronger as her vision was not to be relied on. She saw things inconsistently, usually only peripherally and only if there were bright colors such as gold or shiny silver, later on red and yellow.
We learned that we needed to depend on our own instincts and our own experiences and share these with the doctors. After all, we were with her 24 hours a day. They obviously were having difficulty diagnosing her, since they had saved her life and didn’t think she would be permanently brain damaged. Now that the reality was becoming clearer, these same doctors were having trouble telling us the truth. We needed clear answers.
When Chava was 15 years old, Shneider Medical Center opened in Petach Tikva. Shneider specializes in children’s medical issues and we applied to a special committee for “yeladim charigim” (unusual children) to review Chava’s case and see if they could come up with a diagnosis. After asking us many questions, reviewing Chava’s thick medical file, viewing her original CT scans of her brain, the doctors photographed her and sent her information with the pictures to a few medical centers around the world. They received a reply from Belgium. Chava’s details sounded like Dandy Walker Syndrome. The doctors added that her case is atypical so it is called, Dandy Walker Variant Syndrome. We finally had a diagnosis!
Many years later, when my youngest daughter became Bat Mitzvah she asked me when Chava would get married. The only response that came to mind was to ask her, “What do all parents want for their children?” My daughter replied, “That they get married?” I responded that that’s true, but the most important thing for parents is that their children be happy. Chava is a very happy person and for that I am very grateful!
Chava with her five younger sisters.
Chava with her mother and father
Today Chava lives in a group home in Kiryat Ono with five other young adults. She requires help for all of her physical needs. She attends Bet Noam, a day center for young adults with disabilities. She is busy with therapies, work (for which she is paid!), and social activities. She swims twice a week and does all her physical therapy in the pool. She has many friends and many adults whom she trusts. At least three times a week she goes into the community for afternoon/evening activities. Chava most enjoys trips to the beach, concerts with Chasidic or classical music, and visits from family. She comes home for Shabbat once a month. Chava especially enjoys Shabbat when her niece and nephews are around. She loves small children! Her married sisters regularly call her on the phone and even though she cannot speak, she vocalizes her happiness when they call.
Chava’s presence in our lives causes all of our family, and many of our friends who know her, to remember never to take anything for granted. I am especially grateful that her condition was not discovered when I was pregnant and therefore I was never given a “choice” as to whether to give birth to her or not. To this day, Chava enables us to focus on our priorities and enjoy every minute with her. I truly feel blessed that she is in our lives.
this story has brought tears to my eyes
Thank you for sharing it may you have lots of Nachas
Thank you for sharing… that was so inspiring and interesting to read about.
Chana Jenny, these articles are just so amazing. I look forward to coming to my computer to read your site every single day of Chanukah. Thank you for making this contest!
these stories are also uplifting my chanukah as well–what amazing JewishMOM heroines!
i have only admiration and respect for this mom
but since she is telling her story publicly, it is open for discussion, and anything we can learn from it
is it possible that the condition was not discovered during pregnancy because it did not exist during pregnancy?
it is possible that it is all a result of the medicalized birth
the author does not tell us the reason for the c-section (let’s hope there was a good reason), but certainly
the early oxygen deprivation points to that hypothesis (that this condition is iatrogenic)
now i will get jumped on: why bring that up now?? the child is born already!!
the reason why it could be helpful to bring it up now is that young women read this blog, women just starting out on their birthing careers
caveat emptor
beware of what the medical establishment has to sell you