My friend wrote and recorded this song once, “Isn’t it Nice to Be You”. The last time I heard him play it, it seemed like he looked right at me and smiled. And he nodded, the way he almost always does. He nods a lot. As he sat in front of those 88 keys I felt like he was assuring me that it really was nice to be me.
I didn’t know it, but being able to think about that smile and the nod has really helped this last little while.
Sometimes things don’t go your way. Good things, bad things, catastrophic things can happen to anyone at any point in life and it’s easy to get sidelined and forget the things around us which we can continually count on.
For the last three weeks, I have been worried about things that I cannot control, and a future that I can’t see, yet still deliberately reminding myself about the abundance of love and joy I have in my life and little family. And how I should, quite easily, be content with just that.
A few months ago, I was reading magazines, as I love to do. And with every page I turned it seemed like the each article I read, blurb I scanned, picture I looked at was there to reinforce the difficulty of conceiving after the age of 35. That magical number that all women have in their head as the childbearing age of doom–35! It was just a few months before my 35th birthday, that seemingly dreaded day at which conception became impossible. We wanted to have at least one more baby and 35 was just around the corner. Yikes.
What I didn’t know at the time was that we had already conceived. Less than a month after we were married. Not exactly what I had expected to happen, especially after reading such doom and gloom about conception at 35. And now here we are, expecting our second child, in February of 2014. We’ve told our families, and we’ve told our friends, making it all seem so real and imminent that it could never go away.
But I got the results from my first trimester scan at 13 weeks and they were not entirely favourable.
The call came as I was riding the streetcar to work one morning. As the tears rolled down my face, I quietly got up from the coveted single seat and weirdly exited the streetcar only 2 stops away from where I got on. My doctor explained over the phone that the down syndrome risk was not increased, however, there was a 1 in 81 chance that our baby has Trisomy 13 or Trisomy 18. This means that the baby could potentially have a third chromosome 13 or chromosome 18. Strangely enough, I had done some research on these syndromes the week prior, so I knew that possible outcome was really quite terrible. I completely fell apart when I first got the news, and could barely keep it together in the days following that awful call from my doctor. Fortunately, I was scheduled for vacation the following week, with little to no plans, so I could essentially hide out and be as anti social as I felt. Over time, I started to focus on the math of it all, which helped me control the tears whenever I had to broach the subject. The good math, as in our potential risk, and the bad math—the stats for babies with this disease.
These stats, by no means, are 100% accurate, but here’s the way I see it based on everything that I’ve read. About 40% of Trisomy 13/18 pregnancies carry to term, but the average life span of the baby is 2.5 days. Only 1 in 5000 are born alive and 5-10% of live births make it through the first year. Only 1% live to age 10. For more accurate stats, feel free to do the research, it really is rather heartbreaking.
Now to put this into perspective, our risk for trisomy 13/18 is only 1/81, which is a 1.2% chance that there is something wrong. Small risk, right? As my very wise boss said, when you’ve got a 1% chance of winning the lottery, you’ll never win. But when there’s a 1% chance that there’s something wrong with your baby, that 1% becomes a very real possibility.
We were called to Mount Sinai for genetic counselling, where a very friendly and knowledgeable, counselor explained the results of my first trimester blood tests–the two proteins were low, whatever that means, which is a sign that there could be this chromosomal abnormality. The appointment was surprisingly comforting and we had prepared ourselves for a long two weeks leading up to meeting her. She confirmed the research we’d done with affirmations that this abnormality was certainly lethal to our child, while offering other potential explanations for the test results. She discussed the next steps–the additional testing options we could choose from and answered our questions as thoroughly as possible. She even talked to me about what my choices were, should the baby be confirmed Trisomy 13/18 without casting judgement.
We had opted to have an amniocentesis, scheduled for the following day–where they stick a needle in your belly, through your uterus and into your amniotic sack to gather the amniotic fluid. The fluid contains the baby’s cells, which once retrieved, the scientists break apart to examine the chromosomes to look for abnormalities. The dangers of an amnio are quite small, especially at Mount Sinai, and the test will give you 99% accurate results. In 2-3 short days, we could have all the answers we need.
The amnio itself was the most amount of stress I have ever experienced, concentrated in a few short minutes. But it didn’t take long, and the care of the doctors was fantastic. We’re fortunate to have such high quality of non-discriminatory medical care available to us, with relatively low amount of hassle to get the best. Doctors and counselors at our disposal who are positive and caring with a genuine interest in our health, both mental and physical, at no extra cost to us.
The results of the amnio came in just 2 days later and we are overjoyed with the news that I received over the phone. Our little baby has only 2 of each of the 13, 18 and 21 chromosomes. There is no chance that this child has Trisomy 13/18 or even Down’s.
Don’t get me wrong, I have read wonderful stories about families with a living Trisomy 13/18 child that has blessed them tremendously–but those stories are incredibly few. I admire the parents that have lived through this, or any other challenge to the health of their child, and have come across to the other side and are able to share their story.
It is not lost on me that the other calls that were made to patients awaiting their results were not so triumphant. In fact, the counselor said calling me was the best part of her day. I can’t even begin to imagine what it would be like to get the negative results. And my heart goes out to other mums and dads that have been anticipating good news, and are met with very real devastation when the call does come.
The last few weeks have been incredibly difficult–we mostly kept this to ourselves, only talking about it when we chose, and only sharing with a select few. And now, we can breathe a sigh of relief. Of course you never actually stop worrying until your child is born healthy, and even then you worry, I guess, until the day you die.
Before hanging up, the counselor asked me if I wanted to know if it was a boy or a girl. We’ve opted to wait the whole 9 months for the surprise. And now all I have to do is wait….