Doctors | Lessons from my daughter

No no…. I am not thinking about having another baby. Emily will be 15 in 2 weeks….. I am done!

Seeing my friends get pregnant and seeing their babies reminds me of my pregnancy.

We wanted a baby and tried for a couple of months before we got a positive result. We were sooo excited and Jon told everybody he knew way before the safe time… You know the so many weeks you should be waiting for before you tell… 🙂

Quite early in this process I ended-up at the hospital with major cramps, because of the pregnancy, we had ultra-sounds done and the hospital staff was ready to terminate it all as they couldn’t see the fetus in my uterus. They assumed it was in one of my fallopian tube. They couldn’t see it anywhere but the bloodwork said I was pregnant. That day I learned that we were probably a good 3 weeks less advanced than we though.

I told the doctors that until they could prove that my life was in danger, they were not going to terminate my pregnancy. We scheduled a follow-up ultra-sound…

2nd ultra-sound! – they can see the fetus in the uterus but their is no “c.f.” ….. don’t you like it when doctors are talking about you but don’t want you to understand??? So, I asked, what’s a “c.f.”? The conversation was in French at the time and a c.f. stands for coeur foetal… my fetus’ heart…

From the previous ultra-sound, we knew I was at least 3 weeks behind the original delivery date but it wasn’t changed anywhere… so again I asked, is it possible that it is not formed yet? The answer was yes but we shouldn’t take a chance, we should terminate your pregnancy…. Wait what??? No!!!…. We should not terminate anything…. we should schedule another ultra-sound and see if the c.f. is there …

3rd ultra-sound! – here it is…. my fetus is in my uterus and has a tiny beating heart!

What a relief! We were so happy!

Emily arrived a couple of weeks early when comparing to my original delivery date but when factoring in all the ultra-sound, she was born at least 5 weeks early and she was really tiny (5lbs 6oz). Should my delivery date had been changed, we would have been transferred to another hospital, Emily would have been considered premie… Maybe she would have been diagnosed there…. But that didn’t happened…. we were sent home with our perfect little baby!!!!

The rest is history.

Fast forward a couple of months after Emily was diagnosed…

Someone at work had the …. audacity??? to ask me if I regretted not letting the doctors terminate my pregnancy at the beginning when I had all those ultra-sounds going on…

I can’t remember exactly what I said but it must have been something like …. WTF??? You did not just ask me that….? Emily is the love of my life regardless of what is going on now!

Even in my sleepless full of stress state of mind, I never one second thought I should have terminated my pregnancy. I am not opposed to terminating a pregnancy under certain circumstances… I think it is a decision to be taken between you, your spouse and your consciences…..

At that time, Emily had already taught me the importance of love, care, patience, repetition, …. and more! She had taught me to slow down and not turn into a workaholic…. she had taught me that a cuddle is worth more than anything….

How can someone felt it was ok to ask something like that?

How would you have answered that question?

Back when Emily was diagnosed with the Cri Du Chat syndrome, we were told that we needed to be tested as well to determine if we were carriers.

The thing with genetic anomalies is that you can be a carrier and not have any clues that you are! If whatever piece you are missing is attached to another chromosome, you will be just fine! You will go your whole life not knowing.

So, once Emily was diagnosed with CDC syndrome, we were explained that she was missing part of the short arm (p) of her 5th chromosome. Another name for her syndrome is 5p-

With such diagnosis comes more genetic testing but this time for the parents.

Being tested is simple enough, it’s just a little needle for some blood work than it’s waiting time…. that’s the difficult part.

That’s the part when you try to convince yourself that will not blame either you or your spouse for your child’s condition. To be honest, I was extremely scared of being a carrier and even more scared that my husband was because I wasn’t sure I was a big enough person to not assign blame. I wasn’t sure my young marriage would survive one of us being a carrier… I was worried about my future, my family, my life….. That’s a lot of worrying for a 24 year old mom…

We are not carriers…. it was a relief to know this but it was also a really confusing moment for me as I had to learn to live with the fact that somehow, while creating a new life I had lost a tiny piece of chromosome and that tiny piece meant that Emily would forever be struggling … How did I manage that???

No one knows!

When the genetic counselor told us we were not carrier, they also added that if we decided to have another child, we should contact them and that my pregnancy would be followed closely… I couldn’t quite understand why they wanted to do that as we were young, healthy and not carriers. Our odds at the time were estimated at 1:50,000 to have a child with CDC… What were the odds to have a second one with CDC?

But never mind the odds….. if my baby was tested and had CDC…. what then?

…….

What was the point of this testing? We would have to decide if we were keeping our baby??? Really???

…….

What an interesting idea…

Were we supposed to test our baby than decide to not continue with the pregnancy should the baby has CDC?

Were we supposed to test our baby than decide to continue the pregnancy…

Did we want to make the decision?

Was there even a decision to be made?

…….

I adore my baby girl with or without her syndrome… I would not trade her for all the money in the world… I will give her the best life she could ever have…

How would I live with myself if I decided to terminate a pregnancy because my future baby would be like my first one??? My first one is the love of my life why would the second one be any different?

Why would I be tested if regardless of the test results I would keep my baby?

What was the point?

…….

In the end, we didn’t add to our family… but in the meantime, when considering having another baby we decided that we would not contact the genetic counselor, we would not get tested and whatever happened would be ok with us!

…….

From the outside, it is easy to judge, it is easy to tell someone that to risk having another heavily disabled kid is not a good idea…

From the outside, it looks easy to say that a pregnancy should be stopped…

From the outside, whoever is looking our way knows nothing. Absolutely NOTHING!!!!

Unless you’ve walked in my shoes, bug off! Keep your opinions to yourself!

I will never even consider terminating a pregnancy because my next baby could be as extra-ordinary as the first one!

I have to live with myself, how could I justify doing something like this?

……..

Next time you find yourself on the outside looking in, whatever it is you are looking at…… remember that you probably don’t know half of the story so don’t be so quick to judge. How would you like to be the one being judged?