Mazel Tov Ups and Downs
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I
was sitting and doing math homework with my eight-year-old daughter Shulamis one day a few months before I was due to give birth when she turned to me and asked “Mommy what if the baby dies?”
“If that happens we’ll say Baruch Dayan HaEmes” I replied. “And now we’re up to four times seven. How much is that?”
“Twenty-eight” Shulamis answered. And we continued doing her homework.
The possibility of the baby dying was actually something that I had been thinking about which was perhaps why I was able to give Shulamis such a matter-of-fact answer on the spot. Throughout the pregnancy I had been experiencing a weird premonition that I couldn’t quite put my finger on. The doctor reassured me that everything seemed fine but I myself wasn’t sure what this birth was going to bring.
I didn’t remember feeling this way before the births of any of my three older children. Then again I hadn’t waited five years for any of those children. Shulamis had been born a year after my husband Elchonon and I got married and her two younger siblings had followed in close succession. Their pregnancies had not been preceded by years of waiting and intense davening so perhaps it wasn’t any surprise that this time I was more aware of the possibility of something going wrong.
I was aware but not alarmed. When I was hit with the feeling of ‘What’s going to be with this baby?’ I simply told myself “I don’t know. Whatever will be will be.” And I refused to allow myself to be anxious.
It helped that at the time I was studying a book about emunah on the phone every week with Shelly my longtime TorahMates study partner. Each learning session reinforced my belief that whatever happened to me was decreed and directed by Hashem for my own benefit. Whether I was having trouble finding a parking spot or trying to referee a fierce argument between my kids I would remind myself that this circumstance was orchestrated by Hashem — and that Hashem doesn’t owe me anything.
During the pregnancy I happened to read a Family First article about a condition called tongue tie in which a baby’s tongue or lips are anchored too tightly to the rest of the mouth. Yechiel my second child had been a very fussy baby and now looking back I wondered whether he had been suffering from this condition which makes nursing difficult. Yechiel also had trouble articulating certain sounds and we had been through years of speech therapy with him. When I looked inside his mouth I noticed that his tongue had the telltale heart-shaped tip that was typical of tongue tie. Aha! I thought to myself. In any event I resolved to have this next baby checked for tongue tie immediately.
Sure enough the baby had difficulty sucking from the moment she was born. The first thing I did right in the delivery room was check her tongue. “It probably needs to be snipped ” I told Elchonon.
I also noticed that this baby looked different from our other newborns. “The other ones were all clones” I said to Elchonon “but she has a different look.”
“She’s very cute though” I added hugging the baby tight.
The baby whom we named Henny was a very sleepy newborn and throughout her stay in the hospital she would not nurse at all. “Jaundice ” the medical staff proclaimed when she was a day old and they promptly put her under the lights. When I asked about the possibility of snipping her tongue the medical staff was very dismissive. “Oh that’s old-wives’ stuff ” they scoffed. Even the hospital’s lactation consultant didn’t take my concern too seriously. When I met with her she agreed that the baby wasn’t sucking well but when I later looked at the baby’s file I saw that she had written that the baby was nursing fine.
I couldn’t wait to get out of the hospital so that I could get Henny’s tongue checked out and go see a lactation consultant who I trusted. When the time came to leave the hospital though things weren’t quite so simple.
When Elchonon and I went over to the nurses’ station to pick up our discharge papers the nurse at the desk glanced into Henny’s file and launched into a lengthy explanation about jaundice telling me all about white blood cells and red blood cells and bilirubin. Then she informed me that Henny would have to stay in the hospital another day.
“The problem here isn’t jaundice” I replied in frustration. “It’s that my baby is starving! She can’t suck because her tongue is tied and the bilirubin isn’t clearing out of her system because she’s not getting nourishment. Putting her under the lights isn’t the answer. I need to get out of this hospital so that I can start taking care of my baby!”
Rather than respond to what I had said the nurse continued to stare into Henny’s file. “Then there’s the other thing” she said. “I’m sure you noticed that the patient’s ears have an extra flap and her eyes have an unusual shape. The doctor who examined the patient this morning recommends that you should follow up with genetic testing.”
Hearing Henny described as “the patient” was too much for me and I turned around to hide the tears that were springing to my eyes. Elchonon motioned to me to go back to my hospital room. “I’ll take care of this” he said in a low voice.
When he returned to my room he was incensed. “I can’t believe what that nurse told us!” he exclaimed. “And how she said it! I’m glad I was there to hear this conversation because if you would have told it over to me I would never have believed it. That was so unprofessional!”
The nurse hadn’t mentioned the words “Down syndrome” but as soon as she uttered the phrase “genetic testing” I knew exactly what she meant.
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