A glimpse of hope for our children with special needs children with the help of our community
By Bonnie Sclar-Siegel
In the year 2004, I found out I was pregnant with a daughter with Down Syndrome. Down syndrome is known to be one of the most common birth defects. It occurs in all races, ethnic groups & nationalities. It occurs in 700-800 births in North America . Babies with Down Syndrome have one extra chromosome in each of their millions of cells. They have 47 chromosomes instead of 46.The extra chromosome will affect the child's life. It causes different appearance, some unique medical problems and most likely some degree of mental retardation.
When I went to school to become an ultrasound technologist, I learned with each pregnancy that I had to solve a mystery with every bit of information that was given to me. Every test that was done with a result was a clue in finding out how this baby was going to come into the world. That is why I had every test possible to prepare for the birth of Emily Sofia. Every time I experienced an ultrasound exam, I was able to bond with my baby. This bonding left me fearless as each test indicated that my baby had Down syndrome. When I saw her inside moving around, seeing her features, I realized she did not look any different from the ultrasounds I had with my other 3 daughters.
During my pregnancy I was fortunate enough to download information on the computer about Downs Syndrome, to prepare my family for the birth of Emily. During my pregnancy I also had become aware of Early Intervention. Early Intervention is a program that provides physical, occupational & speech therapy, including special education. The earlier on the child receives Early Intervention, the better prognosis for the child as he/she develops.
In my seventh month the high risk obstetrics/gynecology doctor performed my monthly sonogram and informed us that an obstruction had developed within the baby's stomach. When the doctor told us she would need surgery two days after she would be born, we were devastated! After a couple of days, I told my ex- husband that we were lucky. He did not understand why I would have said this after finding out our baby would have major surgery only two days after being born. I told him, the reason why we were lucky, was that we would be able to prepare for this surgery two months before our baby would arrive. We can choose the doctor we want to do this surgery, and mentally be prepared for the surgery which was an incredible opportunity!
After about 38 weeks of pregnancy & early labor pains, on September 12, 2004, Emily Sofia (Elky Zissy) was born. I experienced my first c-section. My intuition told me that I needed a c-section, and sure enough she was born with the cord wrapped around her little neck 2 or 3 times around. Had we waited any longer she would have lost oxygen. .However, thank G-d that was not the case. She was born 7pounds 8 ounces, a nice size baby for one whose stomach had been obstructed for at least 2 months. After 2 days she was transferred and had her 3 hour long surgery. Thereafter, she had to remain in the N.I.C.U. (neonatal intensive care unit) for 3 weeks. Since Emily was born in the middle of Rosh Hashana & Yom Kippur, my ex-husband & I were accommodated by Chabad to stay in the apartments located close by to the hospital so we can be with Emily to help her regain her strength. Miraculously, Emily came through recovery with amazing strength. Two weeks after surgery she picked her head up pretty high. The physical therapist told us typical children cannot even do this. Her reflexes were strong and her ASD&VSD (2 holes in the heart) closed up. Leaving her with a minor PDA (hole in heart), that had to be followed up. Things were looking up, and I was looking forward to bring Emily home even though she had a feeding tube which scared me. She needed a feeding tube due to her low muscle tone around her mouth. The nurses comforted me and showed me how to care for the g-tube. Then the day came when we were finally able to bring Emily home to her sisters. I was so optimistic when a doctor came over to my mother & I and told us,” These children with Down Syndrome do not have much hope when it comes to academics in school. Try to focus on music. This is what these children are talented in. Do not bother to pressure them into the academics”. He pretty much gave me a grim future, but from doing my own research, I knew it could be different. After being home for only 2 days, Emily was sucking her bottle nicely; she herself took out the feeding tube on her own, and never needed it again. She had received E.I. since she was 3 months old, and still receives services through the board of education.
Emily is now 5 years old. She is a child who is capable of doing anything a typical child can do. She may be delayed 1 or 2 years in school or not, but that’s ok. Many typical children are held back. As the years go on I am shocked that in the modern orthodox yeshivas there isn’t a program that exists to accommodate these children and other disabilities in the Midwood ,Flatbush area of Brooklyn after these children turn 5 years of age. Why shouldn’t Emily and other children like her have the opportunity to mainstream in the areas they are capable reaching their highest potential.
My friend Estelle Peretz and I started to fund raise for this cause. We need the help of the community to make this project come a reality. If you are seriously interested in helping us fulfill this great accomplishment for these special children ,please contact Bonnie Sclar-Siegel at 347-374-3858 or 347-204-5956,Estelle Peretz 917-865-5443.----------------------------------------------------------------------------------------------------------------
Bonnie Sclar- Siegel has four daughters, 17, 15, 11& 5. Bonnie has a Bachelors Degree in Ultrasound and a certificate as a yoga practitioner. Bonnie and her family resides in Brooklyn,N.Y.