Life Takes Courage

courageous

Y’all, life comes at your kinda fast sometimes. Case in point – pregnancy #2. It didn’t even feel real to me you guys, I just knew, based on peeing on a stick that another baby was in route. So I go to the first ultrasound, of course (for me at least) these interim steps of a pregnancy are always pretty stressful so naturally you sigh a relief when the baby measures alright and the heartbeat is there and they check all the proverbial boxes. A few days later I went in for my routine visit with the Dr. after the ultrasound and she sorta chortled that my medical history was so insignificant that we were all good to go, see you in a month, yada yada. As she was leaving the room, she mentioned that a student would be coming in to tell me about a research study. I’m just thanking Jesus the pap smear is done and kinda absentmindedly nod my head at something else that sounds routine, and frankly, sorta like a pain (ahh research hospitals, if you’ve delivered in one, you know what I mean…)

So this young grasshopper of a Dr. comes in and tells me all about a research study they’re doing where they’re testing women for something called CMV – essentially a cold that won’t go away that can be potentially dangerous to the nugget growing in utero. It’s totally free to participate so I say what the heck, sure, I’ve basically had a cold since I delivered my first one 2-years ago (so. many. germs) and I think nothing of it. She tells me they’ll call me in 2-3 days if I test positive and not to worry – that like.01% of the women they test pop up and get flagged for having a primary transmission (or first time of getting the virus), while pregnant, or immediately prior to becoming pregnant.

A week goes by and life is so busy it’s completely out of my head y’all when I start getting calls from Chapel-Hill (where the research hospital is located). I don’t recognize the number, so I let it go to voicemail – forget about it – and a day later, they call me 3 more times, the third time I answer. The research nurse goes right into it – within the first few sentences I’m starting to feel my heart drop y’all. Shit, I think. I know you. I know who you are. I’m thinking back to my conversations with the research assistant the week before and the words 40% transmission rate and neurological damage are sticking out, like hot, glaring, neon danger signs in my head. So I hear maybe 10% of what she says and I try to piece together some brain cells to process what I need to do next – and to what degree I should panic. So she sets me up with a high risk OB at my medical system and off I go to get an ultrasound and learn more about what to do – which is basically – sit around and wait for the fate of this little baby.

I had a full day to read the internet before my appointment, so of course, that provides ample fodder for basically the worst possible outcomes. I learned some positive things, like first trimester pregnancy have a lower transmission rate (20% – since umbilical cord is not fully established) but also some really scary things, like if the child tests positive, a first trimester infection has a 24% chance of leading to severe hearing issues (deafness) and a 32% chance of leading to neurological issues like mental retardation, cerebral palsy, blindness and seizures. Reading over reports you see things like “If contracted in the first trimester, patient should be consulted on pregnancy termination options” – so yes – this is pretty real deal stuff we’re dealing with and a pretty big pivot from my pregnancy with H which was healthy and uneventful and full of frozen pizzas. Ok, the frozen pizza part will probs remain unchanged (let’s be honest).

I’m *lucky* in the sense that the research team that approached me about testing my blood for the virus is also looking at a randomized treatment option, which has been studied for nearly a decade, and shows significant promise for curing and preventing infection of children in utero. It’s frustrating however, since the treatment option is completely randomized, I only have a 50/50 shot of receiving the CMV hyperimmune globulin (HIG), and a 50/50 shot of getting a placebo. The results are nearly unanimous that this treatment works, but the sample clinical size is still too small for them to proceed with offering this in anything other than a trial form. It’s humbling, and scary, to be at the mercy of a large, bureaucratic, and broken health care system. I think about things now like – will this child have a pre-existing condition at birth? What will that mean for them? What will that mean for us?

So right now, we’re tracking the pregnancy closely, and once a month I will go to UNC hospital and receive a 5-7 hour infusion treatment where they (God willing) administer the HIG (vs. placebo) into my blood stream, and I’ll sit there and think about this baby – and wonder about what they’ll look like – and who they’ll be – and how this world will impact them and how they will impact this world. Testing positive for this virus is actually so rare that I am the only participant in the region that is actively pregnant – so I will be the only patient receiving treatment for it at present. Only 10-15% positive cases will exhibit symptoms in an uttrasound, so unless I get an amnio done around 21-weeks, we won’t know if we’re looking at a positive or negative diagnosis until birth, and even then, if they test positive, they could be asymptomatic at birth and lead a very normal, healthy life. If they do exhibit symptoms, that could put them on a much more difficult trajectory with potentially severe disabilities including compromised neurological function.

Y’all Jay and I have talked a lot about this, obviously, and it’s been a heart breaking week for us. So much uncertainty but also so much hope that this child is meant for this world and is meant to be a positive agent of change within it. Sobbing through tears of anger and disappointment and fear this week – I looked up at Jay and told him, I don’t want a child that’s severely disabled, I don’t want a vegetable that lacks an ability to interact and explore and understand and impact this world. But more than that, I feel this deep, deep calm within me that this child IS meant for this world and it’s not my job to decide or intervene in that process, rather, as their parent, it’s my job to tell them, from 11-weeks out, that I believe in you child. That I am your biggest advocate, that I’m always in your corner and that I know you are fierce, I know you are strong, and I know that you are capable of fighting this (and any other battles that come your way in this world) and of persevering through to join us come February.

I keep seeing in my mind, the ultrasound image of this child kicking and moving so healthy in my womb. I have a little profile shot of them ready to go for my desk come Monday – I can already see my little H in the profile. We are family, and families stick together.

A few facts on CMV for woman who are, or are considering becoming pregnant:

  • Did you know you have an up to 50% chance of contracting this virus if you have a child under 2 in childcare (germs!) 😉
  • You’re not supposed to kiss your kiddos while pregnant (lol, right) or share food with them – apparently the germs can be transmitted this way (I can think of a few slobbery smooches that came my way that may have been the culprit)
  • Wash your hands extra vigilantly when pregnant, always a good policy – but taking extra precautions when pregnant never hurts!
  • Most woman of child bearing age have contracted CMV before – if it’s not a primary infection (first time you’ve had it) you’re incredibly less likely to pass along to fetus (like less than 1%). If you’re considering becoming pregnant, you could ask for a test from your OB to see if your CMV negative, and have never had the antibodies. If not, you’d want to be extra vigilant during pregnancy