Some Red Flags

For my friends and family in Canada who may not know, in the USA it’s standard practice to do genetic testing, so I had my blood taken back in September 2017 as part of my prenatal work-up. What I wasn’t expecting, was for it to come back with red flags. I remember getting a call from my OB on my cell phone (that alone seemed strange to me, as doctors don’t typically make a habit of calling their patients personally), but she said not to worry because nothing looked very concerning.  She did admit that it was a result she hadn’t seen before, so she was going to refer me to a perinatal clinic where they could look into things in more detail. Despite her encouragement, I was scared. The very mention of a “perinatal clinic” had me reeling. I remember wondering how this could be “not too concerning” yet require me to go to a high-risk maternal/fetal clinic. I would love to write here that I tried to look on the bright side, or that I remained optimistic despite everything, but that’s just not true. The truth is I remember crying…a lot… and letting my imagination take over, jumping to all the worst possible conclusions.  As a nurse, we are trained to think “worst case scenario” but I think I take it to a new extreme… I have such a hard time not catastrophizing every little thing, particularly where my children are concerned. I usually say to Kyle “I’m spiraling” when I know I’m letting my thoughts get the best of me, so he can try to bring me back to reality… and this was no exception… I was certainly spiraling.

At the time we got this call, we were living in North Carolina, away from all our family and friends in Canada. Kyle was working for a leading tech company with high demands, and as a result I felt guilty asking him to take time off for every little appointment. Since the OB told me she felt this wasn’t a huge issue I thought we should save his attendance for future appointments, but my mom was adamant about me not going to the genetic appointment alone (despite my insistence that I would be fine).   She had a trip planned to visit us anyway, so she changed her flight to a few days earlier to be able to come with me to the appointment. I don’t think I realized at the time how much I needed support at that appointment, and I’m so truly grateful that she was there. Of course if I had known what would transpire, I would have made sure Kyle could be there… but I went in unsure of what to expect with only the encouraging words of my OB, and what i had convinced myself were my own “irrational” thoughts.

The appointment was at one of the leading hospitals in the state, and we met with the genetic counselor first. She asked me a million questions in order to get a detailed history and this was all followed by a 1.5 hour ultrasound where they looked at the baby in great detail. This was by far the coolest ultrasound I’ve ever had, and trust me when I say I’ve had a lot! For anyone who has had a baby and experienced the anatomy ultrasound (the one at around 20 weeks where they spend a lot of time looking at all the structures), this was like that one on steroids! The picture was crystal clear and the baby was so active. I remember saying to my mom “this one is going to be an olympic swimmer” because it was actually doing something that resembled the breast-stroke in there. The ultrasound tech said she had never seen a more active baby, or one that could “swim like that”.  Of course, like any parent receiving a compliment for their child, it had me beaming with pride. She also said she couldn’t visualize the baby’s heart and kidneys properly, but that it was still early so I should come back in a few weeks when the baby had grown larger and things were easier to see.

After all was said and done, they sat me down and discussed our two options to explore the genetic results further. The first was to do parental blood work… They explained that if after the blood was drawn, they found that either parent had similar red flags they would assume this was an inherited trait and the baby would be fine like we were. Alternatively, if our blood came back clear, then the red flag would be considered “de novo” or coming from the baby itself.

The second option was to skip all the speculation and opt straight for an amniocentesis.  This would allow them to look at the baby’s actual DNA and determine any issues with certainty.  Anyone who knows me has probably heard me describe myself as a “rip the bandaid” type of person. I most often choose the path that may be more difficult at first, if it ends up getting me the desired result quicker… but this was different in some way. Truthfully, I was scared and unsure about having an amnio. I was aware of the risks to mother and baby and I wanted to discuss it with Kyle before making a decision, so despite my typical inclinations, I opted to do the blood work as a first step.

The funny thing about all of this is that, as Canadians, who grew up with the privilege of public health care at no cost, we couldn’t help but think about the financial side to all of this investigation, and the new label of “high risk pregnancy”.  It’s so strange how one minute you are pregnant, attending your regularly scheduled appointments, blissfully unaware of any problems, and the next you are suddenly considered a “high risk pregnancy”. I know I’m not alone in this as it happens to many women, but due to our circumstances, Kyle and I decided that we needed to know with certainty what was going on. While it wouldn’t change our decision to continue with the pregnancy, it would help us to determine a course of action for delivery. To us, this meant that if we were faced with a diagnosis that would require multiple medical interventions, then it would be best to deliver in Canada where it was free. So I called the clinic in the morning and scheduled the amnio. We needed answers.

16 week

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