"I'm not saying it's going to be easy, I'm saying it's going to be worth it"
This week we hit the 12-week mark which meant I had multiple appointments, and multiple opportunities to see our little bean bouncing about – and that it did! We have an active little one on our hands this time – it’s probably all that space it has in that big septum-less uterus…I’d be doing somersaults too! I thought this week was busy and tiring with 3 appointments in 4 days but man I was so not prepared for what’s ahead. All I can say is thank goodness for grandparents, coffee and a bloody big calendar! It just means that I have a lot to report in this blog, so feel free to fall asleep at any point!
So on Monday I met with Dr W from Maternal Fetal Medicine at the Women’s & Children’s Hospital. Naturally, the first thing I did was settle James into a chair with my phone secured in his hands so he wouldn’t climb up the costly ultrasound machine and ride it like a toy car (oh how different it is this time around!) We felt we had approximately 1 minute and 9 seconds to take a sneak peak at the little acrobat that has stolen our hearts, but thanks to Jimmy’s strange fascination with toy reviews on YouTube, this surprisingly turned into a rather in-depth examination and I was able to see everything from our babe’s teeny tiny fingers right down to the length of my cervix. So astoundingly beautiful (the fingers more-so than the cervix). After this we sat down and discussed all things NAIT. Dr W said we would start IVIg infusions at 19-20 weeks continuing weekly throughout the pregnancy. While I breathed a sigh of relief knowing I had extra time to prepare myself for this, I also panicked a little at the thought of starting treatment so late (considering James was affected severely by just 30 weeks gestation). Dr W assured me that bubs was safe bouncing around in its little pool of fluid until then…it’s seriously having a freaking party down there, completely unaware of the drama it’s causing! For the infusions, I would go to the labour ward (in case something happened – so reassuring), have an IV line inserted and receive the IVIg slowly over about 6 hours. If my veins don’t cope, I may even need a PICC line (long-term indwelling central catheter) inserted for the duration of the infusions.
Dr W raised a few more points which I think are worth mentioning (more for my terrible memory than your info!) Firstly, once the infusions begin I will become immunosuppressed. If I am exposed to communicable diseases such as pertussis or rubella (or even common viruses), my body won’t make the necessary antibodies to fight this as my blood will already be saturated with antibodies from the IVIg. Being that I work as a nurse in an emergency department and am exposed to these illnesses each shift, I’m well and truly screwed. Just kidding…but Scott and I are strongly considering that I finish work early – well if I’m honest Scott is adamant that I’m finishing at 20 weeks (no ifs or buts), and I’m sitting over here if-ing and but-ing. I’m not keen on giving up luxuries such as Hello Fresh or ending my online shopping addiction. But of course he is right, it’s just not worth it. Secondly, due to my previous uterine surgeries and the resulting scar tissue, Dr W believes I have a higher risk of placenta insufficiency e.g. the placenta may not attach correctly (or attach too deeply) and will therefore be unable to supply adequate oxygenation and nutrients to the baby. This just once again means more monitoring, so he squiggled on one of my 100 forms for the ladies to check my placenta at the 20 week morphology scan. And lastly, he is still wary that I might have cervical insufficiency due to my previous preterm delivery, so he added a formal scan to my plan at 16 weeks to check on this, as well as an ‘informal’ scan in his office at 18 weeks. Dr W is keen to deliver closer to 36 weeks if possible, but he wouldn’t be surprised if we didn’t make it this far. Have you noticed how the word insufficiency keeps popping up…I mean seriously, it used to be ‘infertility’ and now we’ve moved on to ‘insufficiency’. Rub me out and start again!
The next day I went for my 12 week nuchal translucency (NT) scan. In the past, time has stood still and I have held my breath at every ultrasound until I have seen that heartbeat. So it was such a relief walking into that room feeling unusually confident after Dr W had a good ol’ look at everything the day before. The sonographer asked if I would be ok with them doing the scan internally considering they needed to check my cervical length that way anyway. Of course I agreed, it’s not like my vagina hadn’t been through this before! But wow, the pictures we got were incredible – including a gorgeous 4D side view (I have included this below). The little tumbler finally stayed still long enough to get all of the measurements which were spot on! I was then taken through to another room to see the doctor who combined my blood and scan results and gave me our risk of Down Syndrome and chromosomal abnormalities. One of my blood results had come back abnormal (my papp-a was low at 0.3MOM, normal is >0.5MOM) which increased our risk of Down Syndrome, but only slightly – our risk was still extremely low (1 in 606) when looking at the overall picture.
The doctor mentioned that once chromosomal aberrations were excluded, this result can then indicate other things, which my obstetrician would discuss with me at our next appointment. I was pretty impressed that I didn’t start hyperventilating and crying then and there (what the hell was papp-a and why the hell was it messing with me?), but I’m a little ashamed to admit that I did Dr Google as soon as I got to the car! My advice – don’t do this. A reliable source on Google told me that “a low papp-a is descriptive of poor early placentation and may result in adverse pregnancy outcomes such as: mid-trimester miscarriage, fetal growth restriction, intrauterine fetal death, preterm birth, and preeclampsia”. After that initial slap in the face, I actually had a little laugh. How ironic. The main concerns of my doctors were now validated by this blood test…it was like that little plasma protein was pointing at me and laughing ‘if you weren’t worried before, you have to be now because I’m a real scientific thing!’ Of course this was happening to me! But I also read that this result doesn’t always indicate poor pregnancy outcomes and I decided not to do any further research or cry myself to sleep until I saw Dr Yoong in a couple of days.
As expected, Dr Yoong was extremely reassuring. After discussing our scan and appointment with Dr W, I brought up the dreaded papp-a results. He said “it’s my job to worry about that, not yours”. I think I love him! He explained that our babes growth may slow down in the second or third trimester, so the plan is to do 4 weekly growth scans from now including dopplers. We would obviously then act on anything abnormal and take it from there. I had so many concerns which were eased then and there with a simple plan. It’s a little embarrassing to admit but I think after some of our previous experiences, I worry that the doctors a) won’t ‘believe’ in certain things (e.g. a septate uterus), or b) will completely ignore abnormal results (e.g. thin lining), but I should have known better this time given the amazing specialists we have looking after us now. We left Dr Yoong’s office feeling a welcomed sense of calm as we headed to Mildura for a week-long relaxing family holiday, which is exactly what we need before the craziness begins! In the new year we will begin juggling frequent scans, weekly infusions and follow up appointments with two doctors, not to mention a toddler, Miracle Mumma and (maybe) work!
I know this seems like a lot of…let’s call it difficulty…to make a baby, but as Dr W said, yes NAIT is scary, but we know about it this time around and we can treat it. And as for everything else, we know what we’re looking for and can manage it if/when required. I actually had someone ask me if I think the infertility, surgeries and high-risk pregnancy are all worth it, hinting that I’m being selfish and maybe it’s not meant to be. I’m not saying it’s going to be easy, but I can tell you it will 100% be worth it when I’m holding my healthy new baby in my arms. And one thing I know for sure, it is meant to be. James is here for a reason despite the odds being largely stacked against him, and this baby is no exception. Nothing worth having comes easy (well not for us anyway!)
Thankyou to everyone that continues to follow our journey and awaits updates – I write to ‘let it all out’ (and because my memory is so bad I can’t remember what I ate for breakfast), but it is of course nice to know that people are reading what I’m writing and genuinely rooting for me! And if just one person who is diagnosed with NIAT or who gets a low papp-a result reads this, then it is worth it. Because we have ALL been that person eagerly googling for ‘real’ stories hoping to feel less alone.