Latest update: November 27th, 2013
Michael: It was immediate. Though we had no specific foreknowledge that Yisrael had Down syndrome, given our ages and some anonamolies on a couple of the ultrasounds performed during the pregnancy, the idea is not something that would have surprised us. Even though reality can be different than expectations I can honestly say that there was not a moment where I felt I needed to “adjust”.
V: How did your children feel about having a brother with Down syndrome? What is it like for your other children still at home in terms of bringing friends over to the house? How are they with Yisrael?
Michael: I think the combination of our open and positive reminiscing of our time at HASC and our positive attitude from the beginning helped the other children quickly adapt to Yisrael’s special nature. Our youngest was only 6 when Yisrael was born and we didn’t feel the need to tell her immediately. We just wanted to let her enjoy having a new baby brother. When we did tell her a few months later she too, accepted it quite easily.
She has a friend also with a brother with Down Syndrome who is a couple of years older than Yisrael. He’s quite adorable and she quickly related her brother to him. Being very bright, she also wanted to understand the chromosomal abnormality that created Yisrael’s condition.
V: Describe if you will, what happened when Yisrael was born, how you were apprised that he has Down syndrome? How might the staff have better handled this issue?
Michael: Randi had a scheduled C-section given her age and the fact she had had previous complications. Randi was prepped for surgery with a local anesthetic. She remained awake, if not woozy. I was seated safely next to Randi’s head behind a divider that prevented me from seeing her guts on display as I nervously waited to hear that first cry.
After a few minutes of jostling and suctioning sounds the doctor held up my new son, still attached to his umbilical cord. He looked pretty gross, as do most babies who are covered with blood and guts, and yet beautiful at the same time.
Right away I noticed that they appeared to be doing a little more with him than the typical Apgar testing—his was 9/9! Specifically, the pediatrician seemed to be checking his muscle tone by flopping him around like a rag doll. At the same time the nurse quietly said to me, “Did your wife have a skira [routine, detailed ultrasound]?”
Well I didn’t have to be Sherlock Holmes to figure out what was going on. When I went over to look at the baby, the doctor asked me, pointing to his beautiful almond-shaped eyes, “Do your other children look like this?”
Being the nice guy I am I didn’t say out loud what I was thinking, which was, “No, Moron. My other kids don’t have Down syndrome!”
I immediately looked at his palm and sure enough he had a simian crease, an almost certain marker for Down syndrome.
Even though I knew the answer, I asked this Russian pediatrician if he thought that my son had Down syndrome. His reply was, “Well he’s not going to be the smartest kid in the class.”
I went over to Randi and whispered to her, “He has Down’s.”
She said, “Okay,” as if she had known all along.
As soon as he was cleaned up I asked to hold him. The moment I held him, I felt my prior expectations shift to accommodate this new reality. That seemed to surprise the staff! Before being whisked off to recovery, Randi gave our son a kiss and told him she loved him.
They really didn’t know what to do with us. It seems that their standard protocol is to say as little as possible so as not to upset the parents. But we weren’t upset. We had discussed this possibility. We loved him just as we had loved each of our newborn children. We were fine, we were going to be fine, and we wanted to make sure everyone knew that from day one.
V: How old is Yisrael? How do you feel about the level of care that Yisrael receives in Israel? Are you satisfied?Varda Meyers Epstein
About the Author: Blogger and mother of 12, Varda Meyers Epstein is a third-generation Pittsburgher who made aliyah at age 18 and never looked back. A proud settler who lives in the biblical Judean heartland, Varda serves as the communications writer for the nonprofit car donation program Kars4Kids, a Guidestar Gold medal charity.The author's opinion does not necessarily reflect the opinion of The Jewish Press.
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