When Doctors Get it Wrong: Down’s Syndrome Diagnosis

Horrific is not a strong enough word to use when describing the rape of a 12-year old girl with Down’s Syndrome. ┬áLast week in the Holy City of Jerusalem, the monster took advantage of her disability, dragged her to an Aroma coffee shop and raped her in the bathroom. How he initially escaped is a mystery to me (they finally caught him). Why the patrons couldn’t break down the door, another mystery. When my husband told me the story, I almost started to cry. Reading details about the attack provided more details about the situation, and led to an interesting conversation with my husband:

ME: I can’t even imagine what the Father must be going through, he thought she would be safe while he went to pray in shul!

DH: What are you talking about? How could he just leave her outside of shul like that?

ME: I don’t understand? She’s 12 years old. Your 12 year old niece walks around Jerusalem at night by herself, this was in the Center of town in the middle of the day!

DH: Yes, but she has Down’s Syndrome! He had no business leaving a girl with a disability outside like that.

The conversation ended at that point and I went back to work, while DH went back to doing his nightly chores. I realized all too well that this could have been a conversation we had about our own daughter, and about what she could or could not do if she had been born with Down’s Syndrome.

I’ll never forget when we got the blood test results from our Nuchal-Translucency test during my pregnancy with Baby J. I had just finished my Jewish Philosophy final exam and DH was waiting for me outside of Bar-Ilan. It was a scorching hot day at the beginning of summer and I was already showing and wearing maternity clothing even in my 5th month. When I slid into the air-conditioned car, I immediately noticed the weird look on DH’s face. He told me that the lab had called with my blood test results and that they were very bad. In fact, they told him that the odds I was going to have a baby born with Down’s Syndrome were so high, that we needed to immediately go to do further genetic testing.

My head started spinning and I was absolutely shocked. I hadn’t expected these test results and had no idea where to begin. What followed were literally months and months of Doctors appointments, ultrasounds, blood tests, meetings with genetic counselors, and meetings with a pediatric cardiologist who monitored her heart development as many children both with Down’s Syndrome also have heart defects.

Many of the counselors we met with informed us that we had a small window of opportunity, and I use the word opportunity with as much sarcasm as I can possibly relay in the written word, to abort the baby. DH and I walked out of those meetings with extremely heavy hearts and filled with sadness.

We sat down and had a frank conversation about the possibilities. We were aware that there was a decent percentage that the baby would be born healthy. We were also aware that there was a high percentage that the baby would be born with Down’s Syndrome. We were honest with one another and we realized that, if G-d wanted us to be the parents of a Down’s Syndrome baby, then we would be the best freaking parents to that child that we could be!

I won’t lie though, it was a very tense pregnancy and I did all that I could do to prepare myself in the event that our child was born with Down’s Syndrome. We read a lot of articles about the condition and what we needed to care for a baby with Down’s. We read about the developmental delays, how some children are higher functioning than others, and some of the other medical complications that might affect our child. We already had the best pediatric cardiologist in Jerusalem monitoring her heart, and we knew that he would continue as her Doctor if she needed any additional care.

We also decided to let our immediate family know that there was a possibility that our child would be born with Down’s Syndrome. I didn’t want it to be a surprise and we wanted everyone to know that we were still very excited and overjoyed that a baby girl was coming into our lives. We hoped that our families would continue to feel the same way, and that they would accept and love this baby as much as we already loved her.

I never anticipated one of DH’s family members not being on board with our decision, nor did I think she would use a family BBQ as the setting to discuss her feelings with me. But, there we were, ┬áplating condiments and salad fixings for the BBQ as I filled her in on the latest news from the genetic counselor. Very bluntly, she told me that we should abort the baby while we had the chance. She insisted that we were still young and that we could try for a healthy baby. She said that having a Down’s Syndrome child, especially as an oldest child, will shape our entire family.

I don’t remember the rest of the conversation but, minutes later, I took my purse and walked out the door. I called DH from my cell phone and told him that I had left the BBQ (he was at a school meeting and was to come to the BBQ after he was finished) and that I was walking home. We lived about 45 minutes away by foot and DH wanted to pick me up, but I told him that I just needed to clear my head. I walked myself straight to the bakery on Emek Refaim, bought a black forest cake, and grabbed a cab the rest of the way home. I then sat in our living room with the lights off, eating the cake with a plastic fork, crying hysterically.

Six months later, Baby J. was born. The first thing I asked when I heard her cries, was whether or not she had Down’s Syndrome. I asked over, and over, and over again until the pediatrician on call finished his examination and told me that she did not have Down’s Syndrome. She was simply beautiful and 100% healthy. (During the repeated ultrasounds of her heart, we discovered a small hole that fortunately closed up on its own. The murmur she was born with resolved itself by the time she was two years old.)

She has been an absolute joy to our lives and, every time I look at her, I thank G-d that we didn’t listen to the family members, nurses, genetic counselors and friends who advised us to abort her. And, had she been born with Down’s Syndrome, we would love her just as completely and totally as we do now.

I understand that many choose to abort based on these test results. I am not passing judgements and I believe that every family, every parent, has the right to decide what to do with the results they get from some of these genetic testings.

But it’s also important to know that sometimes, the Doctors get it wrong. And sometimes, the results can go in your favor. Listen to your instincts and, if you’re a person of faith, have faith that all will work out.

We made the choice that was right for us. And, every day, we thank G-d that our child was born healthy.

As a Mother, a woman, a human being, I am absolutely sickened by the rape. I wish there was something I could do for the girl whose life is now completely altered, whose world has been totally changed, who will have to live with this nightmare. I know that I am very limited in what I can do. I will, however, encourage all parents to be on the alert and protect your children. Just because we live in Israel, doesn’t mean that monsters do not live here. And, just because someone wears a yarmulka on his head, doesn’t mean he is trustworthy.

Please, protect your children, no matter the age, gender or whether or not they have a disability! It’s the least we can do as parents.

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7 Responses to When Doctors Get it Wrong: Down’s Syndrome Diagnosis

  1. Hadassah says:

    This post touched me so deeply. All kids no matter their abilities or disabilities have the right to be protected. HUGS

  2. I found each day of my pregnancy enough of a scary gamble even with good test results. I cannot imagine what you went through. And I admire you so much for the decision you made – and thank God you did!

  3. Netanya says:

    I wonder how that relative feels now knowing that Baby J is completely healthy b”H and she told you to abort her.

    Did you do a nuchal translucency with your current pregnancy? I did with my first but then I met someone who had the same experience as you and I decided not to do the test the next time because I didn’t want to deal with the stress.

    • holylandhipstermom says:

      I did nuchal translucency with both, even though the first results were not good. I decided I wanted to know either way

  4. ilovemychildren2 says:

    Thank you for posting this! It gave me a glimpse of hope that ng daughter will be born healthy. I am 21 weeks pregnant and last week, I met with a geneticist, a ob/gyn, and a cardiologist who all diagnosed my baby with DS. My husband and my family do not have any history of DS and I have 2 healthy children. I agreed to undergo amniocentesis and the official results hasn’t come out yet but the geneticist had been callling me to tell me that the amniocentesis confirmed the blood test a.d ultrasound that my daughter will be born with DS. I had been crying for a week now because I can’t imagine the pain and suffering that my daughter will go through. Nevertheless, snorting the baby is never our option. We will love and take care of the baby no matter what. It was annoying when the doctor and the geneticist told us that we only have this week and next week to decide if we want to continue with the pregnancy…..losing the baby is never an option for us. I am hoping and praying that the same miracle will happen to my daughter. Thank you for sharing your story.

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