Summary: Last month, Yehuda and Tzipora Frager wrote of the unexpectedly early birth of their son while attending a Shabbaton in Tennessee. When the premature infant was diagnosed with Down syndrome, they were distressed not only by the diagnosis but also by the insensitivity of the staff, who tried to convince them to leave the baby at the hospital. On the other hand, they were buoyed by the in-person brachos from Harav and Rebbetzin Gifter, and grateful for the support of their family and the help of Dr. Steven Caplan, their pediatrician in Baltimore.
Although I was overjoyed to be in Baltimore with my baby boy, I felt a sense of foreboding. In the Knoxville hospital, the TV was on in the room, and I was alone nursing my son, two nights after he was born. The program was suddenly interrupted with a special announcement about the Americans in Iran who had been taken hostage by Iranian students over two weeks ago. The announcer reported that the United Nations had rejected the United States’ plea to condemn the Iranians, who were threatening to put the hostages on trial. I felt my world crumbling, because I had never experienced a large group of my countrymen so helpless, with the strongest super power not able to help them. I really believed Moshiach (the Messiah) would arrive any minute, because of the anxiety I was feeling, personally and globally. I fervently davened (prayed) for Moshiach, because I wanted my son to be cured from Down syndrome – I wanted no one to suffer anymore.
Emotionally exhausted from the stay in the hospital, I could not stop thinking of the negativity surrounding this life that was newly born, a life the Knoxville medical team did not believe was worthy of a normal existence, in their “medical opinion.” I hoped that I would soon be anchored with strength from our family and friends.
Upon arriving in Baltimore, there were many concrete issues to tackle. The shalom zachor (a ceremonial “welcoming” the male baby on his first Shabbos night) was the first concern on my mind. The day of our arrival was Thanksgiving, which meant the next day was a short Friday and an early Shabbos. Yehuda and I wanted to host an appropriate shalom zachor. We invited our relatives, friends, rabbis, and acquaintances, and hoped that the event would concentrate on as many divrei Torah (words of Torah wisdom and inspiration) as possible. The shalom zachor worked out just as we planned. My mother, a”h, and, ybl”c, father helped me choose and prepare the food. Our son made his debut, sleeping.
From the beginning, Yehuda and I decided that, except for our very close friends and relatives, we were not going to discuss our son’s condition until after the bris (circumcision).). We made this conscious decision because we wanted only heartfelt brachos (blessings) leading up to the simcha (happy occasion) of the bris; we wanted to avoid expressions of sympathy or pity for our situation, as well as to maintain the same happy atmosphere that surrounds a baby born without a diagnosis.
Soon we began receiving phone calls from people asking if something was wrong with our son, starting with an unmarried male friend, who asked Yehuda that first Friday night if our baby was maimed. This incident and other phone calls from “friends” confirmed our decision to wait until after the bris to allow ourselves to discuss our baby’s extra chromosome with people who felt they were our friends but mostly just wanted information, and even with people we thought of as friends who thought they needed to help us analyze the situation and “face reality.”
We had family and close friends, and those were the ones with whom we wanted to test the waters, so to speak, and venture into discussions that might not conform to our opinions. We felt safe with them. We knew how we thought and felt, and we were learning how to process our family’s and friends’ thoughts and feelings. At this point, we did not want or need other emotions to confuse us or lead us to second-guess our decisions.
We were beginning to learn about raising a child diagnosed with Down syndrome in a not-so-perfect world. We also began learning how to help our child live as an eved Hashem in a world where various types of people wanted to question the validity his existence. Yehuda and I began learning that there are many day-to-day situations, interactions, simchas, and activities that were not to be taken for granted.
On our baby’s ninth day of life I took him and my daughter to Dr. Steven Caplan, our pediatrician of choice, for his first examination. Dr. Caplan, who had been so helpful to us in Knoxville, and who was, providentially, an expert in Down syndrome, discussed our baby’s medical health and gave me referrals for programs that would give him a chance to meet the first year’s milestones in a timely manner. (Some babies diagnosed with Down syndrome need assistance with holding the head up, turning head from side to side, turning over, sitting up, crawling, standing up, and walking.)
We also discussed the bris. Dr. Caplan explained that if our son had been born in Baltimore, he would still be hospitalized, because he was not yet five pounds. (Raphael was born at 4 lbs. 12 oz. but had lost weight and was 4 lbs. 9 oz.) Dr. Caplan said that, thank G-d, our son did not have the associated health issues that many babies diagnosed with Down syndrome have, in particular, severe issues with the heart. This was the reason Dr. Caplan was able to insist that the medical team from Knoxville discharge our son. If our son had any severe medical concerns, he would have had to stay in Tennessee until he was stabilized.
Another of Dr. Caplan’s concerns was that our family had not been treated appropriately, which had caused more anxiety about our son’s birth than was necessary. Our pediatrician was sure once our family came back to Baltimore and had the support of family and friends, the next steps would be a little easier.
I discussed with Dr. Caplan the Knoxville medical team’s recommendation about not having more children. Again, Dr. Caplan discussed my issues, not his (something the medical team in Knoxville did not do). Dr. Caplan said that being part of family was important for any baby’s development and having siblings older and younger than our baby could help him grow socially and be part of society. Dr. Caplan said that I was an Orthodox Jewish woman, raising children in a Jewish home, and that our baby’s diagnosis should not be the basis of all our decisions. Dr. Caplan stressed that Down syndrome Trisomy 21 is a random occurrence at conception and is not hereditary. Giving birth to such a baby is thus an “equal opportunity” event for any parent. Dr. Caplan concluded by saying that my husband and I should discuss it with each other and our rabbi. He did not agree with the scare tactics that were used with us in Knoxville.
Dr Caplan stated we could not have the bris until our son weighed five pounds and had no medical issues, such as an elevated bilirubin count, an indication of jaundice. There was another issue that had to be addressed: Our son needed an examination from a pediatric urologist because of other issues babies with Down syndrome might have that could affect their ever having a bris. This was the day I learned that the extra chromosome can affect every cell, limb, and organ, as well as gross and fine motor skills and cognitive abilities.
Dr. Caplan confirmed what the neonatal nurses said; our son had good muscle tone, was relatively healthy, and instinctively knew to suck with a strong grip. These three facts were important because they indicated that he could learn to hold up his head, turn over, sit, crawl, and walk with less delay than babies who lacked good muscle tone; 2) he might not have many hospitalizations, which can slow development; and 3) he had a strong grip when sucking, which meant he could drink formula or mother’s milk. This ensured that he stayed healthy and thrived during his critical, initial development period.
Dr. Caplan then discussed with me the best way to obtain the appropriate help for our son. I left with a referral to Sinai Genetic Counseling center, a one-stop agency which, in 1979, was the fastest way to access case management for a baby diagnosed with any type of disability. The place was called “genetic counseling,” because the blood test that confirmed the Down syndrome diagnosis dealt with chromosomes, cells, and genes. The department was located at Sinai Hospital, so the blood test to confirm our baby’s Down syndrome diagnosis could be set up, done, and stored at the same place our pediatrician was located.
Sinai Genetic Counseling had one social worker on staff, who worked in the capacity of both case manager and therapist. The case manager helps the client access as many community services as possible, while the therapist deals with the emotional obstacles that interfere with the client actually following through with obtaining the services. It was an efficient way to make sure families received the services as fast as possible. Sinai Genetic Counseling services was a godsend for me. However, as technology has progressed to make information and services available faster, the model of case management, therapy, and medical services all at one place has become obsolete. Presently, many families choose an outpatient mental health clinic for case management and therapy and keep their original pediatrician.
After the appointment with Dr. Caplan, I went home to our Pickwick apartment with many ideas swirling through my mind. But first things first: We were totally exhausted from spending the entire day at the pediatrician’s office. The baby had to nurse, our toddler daughter needed to drink and eat, and dinner had to be cooked for my husband, who was coming home from work.
Yehuda and I agreed we were going to keep functioning as a normally as possible. We believed that – by acting like any family negotiating a new baby and his specific needs, rather than treating him like the “poor baby” – our daughter and son would benefit from the best environment for our family. Spiritually, we did not believe Hashem had done anything “bad” or had singled us out for this task. We believed that it was what it was because of the ratzon Hashem (will of G-d) and that we would do what we were supposed to do to the best of our ability.
The next day, I spoke with Sharon Gittleson, LCSW-C, a social worker with the Sinai Genetic Counseling service. Ms. Gittleson discussed the chromosomal test for our baby and the ramifications of the testing. I was still hoping the test would prove all the medical professionals wrong. So as one can see, I was in conflict about doing the ratzon Hashem. On one level, I just wanted to hear this was all a big mistake.
Ms. Gittleson asked me if I wanted to speak to some one who had a baby diagnosed with Down syndrome. I was only interested in someone who had an older child diagnosed with Down syndrome, because I wanted to know how the child was functioning. Ms. Gittleson referred me to someone, who ended up calling me later.
Ms. Gittleson and I discussed what I hoped my baby could learn to do. Somehow, the conversation turned to my baby growing up and driving a car. Ms. Gittleson said that someone diagnosed with Down syndrome would not be able to pass the written driving test. Tears sprang in my eyes, but I did not want her to know I was crying (just as with the social worker in Knoxville). I choked down the tears, told her I had to go to take care of my daughter, and hung up.
I called Dr. Caplan’s office and asked to speak with Dr. Caplan. I really needed an empathic social worker who was a therapist and case manager. Instead, I called Dr. Caplan to help ground me. Thinking back now, Dr. Caplan really acted with great kindness. He listened to me. I was so confused that I could not stay strong, and the slightest phrase caused me to cry. I also didn’t trust any professional except my doctors. I thought they wanted to destroy any baby with a disability as well as hurt the parents. Now, as I reflect on the Knoxville experience, I realize just how traumatized I was. It is only through therapy, becoming a therapist myself, eventually, and being there for many people who have also been traumatized that I learned how to process for myself traumatic events and their aftermath.
Dr. Caplan helped me understand that I needed to call Ms. Gittleson back and tell her that what she said had upset me. He helped me understand that, in order to help my baby, I had to navigate my own emotions. My calling back the social worker was very important to me, because I had to know that I could advocate for my child without falling apart. Also, it is better to go directly to the person who annoyed you than complain to another person. This is essential for successful communication, even if the communication does not turn out the way you want it to.
I trusted Dr. Caplan, who is not only an excellent pediatrician but, more importantly, a mensch with refined middos (character traits). I instinctively knew I could learn from him insightful ways of interacting with people for my children’s benefit. This was the reason I listened to his suggestion and immediately called Sharon Gittleson back.
Ms. Gittleson actively listened to me state that she had hurt my feelings by saying that my baby boy would never drive a car. She validated my feelings and did not act as if I were insane – which, by the way, helped me trust myself and be as honest with this social worker as possible. I asked Ms. Gittleson why something like driving a car would throw me into a tizzy; my son was only nine days old and had a decade-and-a-half before reaching the age when one is allowed to drive. Ms. Gittleson explained that driving a car is a form of independence, and parents want their children to grow up and be independent. When I thought of our baby driving a car, I was actually facing my concern about our son’s adult independence.
Speaking with Dr. Caplan and Sharon Gittleson was the first real positive experience I had with a treatment/medical team since our baby was born. They helped me normalize what was happening to me. Feeling “normal” and not being reprimanded for my feelings and emotions helped me understand that raising a child with a diagnosis of Down syndrome is possible. The feelings of inadequacy, of how am I going to be able to give my son what he needs, began to decrease. The emotions of doom and gloom for my family started to subside. I realized it makes a difference how information is given to a person. The non-judgmental attitude went a long way!
I decided, then, that it would be a good idea to concentrate on the concrete daily issues of getting my son to his bris, so he could have a name, instead of thinking or discussing abstract future ideas. Only Hashem knew what the future would bring. I became more steadfast in my desire to keep davening for wisdom and the strength to do what I needed to do. I asked Hashem to help me do what I was supposed to, and if not, would He please direct me and help me have bitachon (secure confidence in G-d) with the outcome. I resolved to be patient and address other issues and goals in my life.
Yeah, it is easier said than done!
Next month’s installment will discuss how one remains steadfast with bitachon and emuna (faith), as well as confidence that their derech (way) of raising their child with a disability is the best way for that child and the family, when the environment throws so many unpredictable variables. Many thanks to my dear husband for encouraging me in my writing and for editing this article.
© 2013 Tzipora C. Frager
