Issue #28 – Our Street Minyan

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There is something about Friday night that makes it a beautiful night. In addition, it is the only day of the week that I get to visit my neighbors across the courtyard that separates the two rows of houses in our development. And every week, without fail, I get to witness the special sight of Moishey Sander coming home from shul. He stops at the door, puts his hand gently on the mezuzah and gives it a loving kiss. This thirty-second weekly encounter strikes a chord deep inside of me every week anew. When I observe his tenderness to that which is real, it gets me to ponder what actually matters.

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Issue #28 – Lucky Moms Chat

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The Lucky Moms text chat was created by and for mothers of children with Down syndrome, as a means to connect.  It has been providing support, resources, information, inspiration and of course a touch of humor to each member’s day.  The Lucky Moms group is helping many of us survive these tumultuous times.  Following are excerpts of conversations from this time period.

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Issue #28 – Pesach Under Lockdown With My Twins With Down Syndrome

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Some of you may have heard about my twin daughters, Nechama and Batya Kuessous, both born with Down syndrome. They were actually featured in Issue #9 of Down Syndrome Amongst Us, many years ago. They are currently 24 years old.

When the coronavirus hit, I was a little worried about how it would affect them. They are generally very social and thrive on friendship and connection to other people. Every day they travel to Lakewood to The Special Children’s Center where they attend a job training program. They normally arrive home at 6:15 pm. They eat supper and then their phone is usually ringing off the hook with acquaintances offering to pick them up for slurpies, a shiur or even a short drive around town.

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Issue #28 – In Memoriam: YY Forever

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It is hard to believe that we are writing about our darling special brother, Yechiel Yosef a”h or YY, as he was so fondly known. He is still so vibrant and alive in my mind, smiling broadly with a twinkle in his eyes.

I am putting pen to paper in the hope that people will be inspired by what YY managed to achieve in his short lifetime and learn from it.

YY was born Shavuous 1999, just as women everywhere were lighting candles to accept the Torah and reciting the special tefilla of V’zakeini.

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Issue #27 – Prenatal Diagnosis and Management of Congenital Heart Disease (CHD) in Down Syndrome

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What is Down syndrome?

Down syndrome is a genetic disorder which affects the 21st chromosome (out of the 23 pairs present in every cell). It is caused when abnormal cell division results in an extra full or partial copy of chromosome 21; hence it is also called Trisomy 21. This extra genetic material causes the birth defects, learning challenges and physical features of Down syndrome. It was first described by John Langdon Down, a British physician, in 1866 but the genetic abnormality was only confirmed in 1959. Of note, Dr. Down’s grandson was born with Down syndrome.

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Issue #27 – Down Syndrome and Pulmonary Hypertension

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“My baby has already been seen by her cardiologist, so why are we seeing another cardiologist?” This is a very common question I am asked, when I consult on a child with Down syndrome and pulmonary hypertension. Most infants with Down syndrome (DS) in the current era have been diagnosed prenatally and families do know what to expect with regards to congenital heart disease, hypothyroidism, gut abnormalities etc. But pulmonary hypertension is something that really cannot be predicted with prenatal echocardiography or ultrasound scans or by any other form of routine testing.

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Issue #27 – Cardiac Care of the Adult with Down Syndrome

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About 50% of babies born with Down syndrome will have some form of a congenital heart defect. Congenital heart defects result from disruption of the normal development of the heart chambers, valves and/or arteries in the first three months of pregnancy. These defects are diagnosed by performing a heart ultrasound (echocardiogram) during pregnancy or shortly after birth. Babies with significant heart defects often develop clinical signs and symptoms including a heart murmur, low oxygen level (cyanosis), fast breathing, or difficulty feeding and growing.

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Issue #27 – Preparation is Key

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Having your child undergo medical testing, invasive procedures, surgery, or other medical interventions can be a very frightening experience for a parent. Even as an adult, these events can induce fear and anxiety; even more so for a child and especially for a child with a disability. Children with Down syndrome often have other medical conditions that require medical attention at various points in their lives.

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Issue #27 – On The Double…

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1. Tell us about your double surprise birth…
On Erev Sukkos, September 22, 2012, 5 minutes before the zman of Yom Tov, after a very challenging, high-risk pregnancy, which was threatened numerous times, our twin boys were born prematurely at 34 weeks. Right after they were born, the NICU team showed the babies to me and I was able to see them briefly before they were whisked away. Weighing approximately 3 pounds each, they were crying and seemed to be doing well. Nothing appeared to be suspicious…yet.

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