RE-LEARNING HOW TO LIVE, LOVE, AND LAUGH 

AFTER THE LOSS OF MY BABIES - ONE SONG AT A TIME.

obabywhereartthou@gmail.com

  • Sara

Third time lucky?

This post is best read whilst listening to "Just Breathe" by Pearl Jam.


There we were again. Without fully expecting it, without even thinking it would be that quick, there we were again, sitting in bed on a Saturday morning of late September, staring at a positive pregnancy test whilst not really knowing whether we should be happy, excited, confused or terrified. I guess we ended up being all of those things, and then some. I had given birth to Luca only two months before, and I was still grieving and recovering emotionally from his loss. Nonetheless, the urge - physical and psychological - to feel another life bloom and grow and thrive inside me was immense, so a part of me was thrilled to be given another chance. Another, much bigger and louder, part of me, though, was absolutely dreading this third pregnancy. The awareness that we could, once again, need to terminate this little life due to the genetic condition that Daniel and I carried, was enough to make me plunge in the deepest and darkest hole of sadness and fear.


This time, though, we were a lot more prepared, and had the most incredible team of professionals looking after us and this rainbow baby. A few weeks after Luca’s death, we met with Sally, our genetic counsellor, who informed us of the possibility to receive NHS-funded IVF with PGD (preimplantation genetic diagnosis): in a nutshell, it would have meant undergoing standard IVF treatment plus the genetic testing of the embryos, and the subsequent implantation of only the healthy one(s). Sadly, though, she also told us that the waiting times for this were going to be long - at least a year. This was due not only to the current lack of public health funding, but also to the fact that our genetic disorder (rhizomelic chondrodysplasia punctata type 1) was not yet approved as a genetic condition that embryos could be tested for. Talk about super rare stuff, right?! I think it’s also because of this that we decided to give IVF a miss, at least temporarily.


When I got pregnant naturally, I phoned Sally almost straight away to let her know, and she spoke to me about something really promising. She said they might be able to devise an ad-hoc blood test that I should do at nine and ten weeks of pregnancy, to look for Daniel’s genetic mutation in my blood. Because at this stage of pregnancy the maternal blood already contains DNA cells from the baby, this blood test would have potentially spared me another CVS. If Daniel's mutation wasn't found it would mean two things: either the baby didn't have RCDP1 at all, or he/she had inherited only my mutated gene and therefore was a healthy carrier, just like Daniel and myself. Either way, our baby would be fine and there would be no need for any invasive procedures to look at the genes in more detail.


The first month of this third pregnancy almost flew by - I started feeling pretty nauseous at around the end of week five, and exactly like during Luca's pregnancy the sickness only appeared in the evenings, sparing me the rest of the day, which I was pretty grateful for. October came, and the days grew shorter and chillier. Oddly, I was craving colder weather: after all, the past two summers had been the time when both my babies had died, one in August and one in July. I remember that this thought made me realise that this third baby was due in early June. Of course, that's if he or she made it to the end, which to us was not a given. The future felt more uncertain and frightening than ever. I was currently on maternity leave - allowed to me because Luca was stillborn after the 24th week of pregnancy - but was due back in the office around February 2019. I didn't want to think about it - my workplace hadn't been helpful or supportive at all, and I knew it would be extremely challenging to go back heavily pregnant with another baby.


I remember trying to keep myself as busy as I could, but it wasn't easy at all. I was on maternity leave yet could not connect to any new mums with living children: where was my baby? Where was my place in their world, made of postnatal yoga classes, loud and cheerful baby groups, and mid-week coffee meet-ups in those buggy-loaded Crouch End cafes? So, I ended up spending lots of time on my own, or chatting to other bereaved mums that I'd been lucky enough to have met first online, and then in real life. Little by little, they became a true lifeline in those months - they still are, to be completely honest. Only a few of them knew of my new pregnancy, and each one was so incredibly happy, supportive, and hopeful - which saw me through that tough first trimester and beyond. I would cry for Luca every single day. I missed him and longed to have him back, and I was desperately trying not to get attached to this new baby. It just didn't feel right, not yet, my heart wasn't ready to withstand another potential loss so soon. I went by my life almost pretending not to be pregnant, which was quite a contrast with what I was actually doing: I had stopped drinking whatever small amounts of alcohol I would normally consume, I had started taking my prenatal vitamins, and I had stopped exercising too intensely.


The nights were still the hardest time of the day for me. I was still haunted by nightmares: waking up to find pools of blood on the sheets. Lying on a scanning bed and hearing those awful words "There's no heartbeat". Me and Daniel crying and screaming in pain. A short relief came when, in mid-October, one of my best friends from Italy, Bob, visited us for a week. We were blessed with wonderful weather and went on long walks all over North London, cooked lovely meals together, and even went to an Idles concert. Aftet the gig, we chatted to Joe, the singer, who also lost a baby, Agatha, during labour in June 2017. Joe and I had connected soon after Luca's death and built a friendship over our respective losses. I will never forget how Joe's eyes lit up while simultaneously a huge smile appeared under his thick moustache after Daniel and I told him we were expecting our third baby. He was ecstatic and gave us the biggest hug.


At the end of October, we went in for an early scan, when I was around eight weeks. This was roughly the 30th scan we'd had in total since our first pregnancy the previous year. Going to a scan was, without sounding too dramatic, hell on earth. It meant holding my breath, feeling my heart pumping super-fast inside my temples, battling with feelings of dizziness, nausea, anxiety, stomach pain. I hated it. And I hated that I hated it, that life had ruined something that I'd always imagined like a magical, incredible experience: seeing your tiny baby pulsating with life on a screen. Once, twice, three times, and then meeting that baby on the outside, full of life and energy and health. That's all I wanted, but it never happened. On that late October afternoon, we learned that our baby had a heartbeat, and measured exactly as expected. A minuscule part of me started to hope - only for that hopeful feeling to be shattered once again.


A couple of weeks later, as scheduled, Sally took my blood samples at UCLH, saying the results would be available after a few days. During that time, I continued with my "let's pretend I'm not actually pregnant" attitude - I occupied my days with lots of creative stuff (writing, playing my ukulele, drawing, painting watercolours, gardening) whilst battling with that awful pregnancy sickness and trying to look after myself and my health. It was so bloody difficult and I don't really how I managed it. The grief and longing for Luca were also always present, and I still found myself crying very, very often.


It was a late Friday afternoon when my phone rang. I was watching a particularly juicy episode of "How to get away with murder" (another strategy not to focus on my baby, of course) and as soon as I saw "No number" on the screen I knew it was the hospital with my results. Sally's pleasant voice greeted me but I must have misjudged her seemingly chipper tone because the words that she uttered crushed me: "I'm afraid the baby has inherited Daniel's mutation." I immediately felt my heart skipping a couple of beats and my eyes filling with tears. I think I paused for a second and said something like "Oh, ok." I mean, what else was I supposed to say? Sally proceeded to tell me that she had already scheduled a CVS in a week's time, because at that point this was the only way to find out whether I'd also passed the baby my faulty gene, or the healthy one. We now had a 50/50 chance that this rainbow would not come home to us, just like his two siblings. I didn't know if I was ready to say goodbye again. I surely knew that I was sad, angry, furious in fact, sick and tired of having to deal with another hurdle towards bringing a baby home to us. I was immensely and utterly exhausted, and now I had to undergo another invasive procedure (I already had both a CVS and an amniocentesis with Luca only a few months earlier) which could potentially result in a miscarriage. This was just so, so unfair, and I was scared to death.


But hadn't I already been to hell and back, coming out the other side more or less intact and still standing? I felt like an ancient building surviving the most devastating flood - cracked, discoloured, but with solid foundations. Somewhere inside me, there was all the strength I needed to face this new obstacle.


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