After 2 years of trying for a baby we found out 12 days before seeing our IVF consultant that we were pregnant. We were bursting with absolute joy, before the anxiety set in that I had to get to 12 weeks before I could relax. After 2 private scans and a first trimester absolutely full of sickness we had the joy of reaching out 12 week scan. We aren't social media people so we went around telling all of our loved ones about the amazing news, grandparents and great grandparents were delighted it's all be so wonderful. We had another scan at 16 weeks and found out we were having a girl, we had a mini socially distanced gender reveal and that night we came up with a name that just felt right, Florence. After a few weeks of headaches and a 4 days migraine, for the first time in pregnancy I felt better! I was walking everyday and getting into my bump workouts. Flo was obvious now so I walked around with my tummy proudly on show knowing people could see I was pregnant and not like I'd just been hitting the cookie jar in lockdown. We then had our 20 week scan on 17th June and I boldly walked in with my husband waiting in the car saying 'see you in a bit. I won't be long and I'll see if I can get a video of Flo'. They were running really late but I'd waited with my pee sample and Flo happily kicking me. Finally I was called in and o had a lead sonographer, I'm in good hands I thought. She's quiet whilst scanning as they usually are and I can hear the clock ticking, I look up and think, I've been in here half an hour she must be done soon. Silence. Another 20 minutes goes by and she finally says ' I can only find one of baby's kidneys'. The first thing I think is well you can survive with one so that ok. She then continues to tell me that there's also a problem with baby's heart. I broke down. My world as I once new it, my happy pregnancy, my little baby bubble I've been self isolating in came crashing down around me. I felt like my heart had been smashed into pieces. When I got home I looked in her room at the things I'd stupidly bought in preparation for the birth of our baby, recalling the times I stroked the feet of her "born in 2020" outfit thinking how much I can't wait to meet her. I hide it all in the room and shut the door, I just can't bare to look at it.
I was booked to see the consultant obstetrician the next morning and referred to St George's FMU. I was a mess. I'd had 3 hours sleep, barely eaten, been sick, and googled everything it could be with the little info I had. Thankfully my husband is allowed into the scan this time and she confirms the second kidney is present, but they are high up and in a horseshoe shape, some googling afterwards set my mind to rest that this is treatable and sometimes not impactive at all. The major congenital heart diseases are ruled out as she confirms that it's not glaringly obvious. And breathe. Waiting in the counselling room I get a call from St George's to see me that afternoon. So we say goodbye and set off.
The cardiologist scans Flo's heart for over an hour, the diagnosis is there are slight concerns but she is confident these will sort themselves out. But what they have seen still needs some investigation. So she has two kidneys and her heart is relatively ok, 'Ok' I think. I know this would mean labour ward birth/caesarean, NICU and possibly further intervention but that's ok, my "perfect" birth and newborn experience was robbed yesterday but I have a new one today.
I then go to the FMU for a further scan. These people really seem to know what they are doing! The diagnosis of this scan is that her kidneys are small and in her pelvis?! Not what we were told previously which seems very odd and totally opposite direction to this morning's location! Unfortunately the combination of the two issues, plus the fact she is small suggests a chromosomal abnormality. An amniocentesis is suggested. We went away and said we'd call them to book. I just needed to get my head around this nightmare I was now living in.
Friday 9am finally comes after another night of no sleep, sickness and constant crying. I have more questions so I call the cardiologist nurse and I'm curious as to what it could be. What exactly are we dealing with here? She says the most probable diagnosis is 22Q11 deletion syndrome aka digeorges syndrome (yeah I've never heard of it either) after an hour of googling and lots of tears we call back to book in the amniocentesis for Monday. I call ARC for some advice who send me leaflets on TFMR and continuing a pregnancy after diagnosis. Everyone I talk to in the medical profession seems fairly certain the indicators I describe are the diagnosis of our little baby Flo.
In the meantime I wait. I stare at my phone googling all the possibilities, the outcomes and the decisions that are hauntingly heading our way. Knowing that this time next week you will know if your baby is disabled, whether she will survive or whether you'll be faced with making the decision to give birth to her or have her surgically removed. It's sickening, absolutely gut wrenching, heartbreakingly painful.
The trauma from this experience gives me such a different view on pregnancy and I'm desperately trying to find the lesson in this. I cannot escape this nightmare, I dream of being in a hospital corridor waiting for bad news and I wake to realise I was recalling recent events.
She is our Flo, she kicks me still and is growing so much that my belly now moves. I used to shout to my husband 'come and see this! How cool is that' and then rub her and talk to her. Now I die inside with every movement, I jump with fear and would walk away in that moment if I could. When I fell pregnant I planned ahead, planning my mat leave, my handover at work, babysitting, even down to my remortgage that falls in the time of unpaid leave. Just making sure there's no nasty surprises along the way. No stone left unturned. This pandemic has meant nothing to me, I've totally enjoyed just me and her at home, pottering around, dancing, singing, swaying. Trying to get from day to day in sickness and living the most magical experience in health. My plans stopped at November because after that it was mummy and Flo bonding time. I watch YouTube videos on breastfeeding, read up about hypnobirthing, I have 10 apps all logging where we are in gestation and what's going on. I always talk about when she is here, our first Christmas together, looking for matching hats to leave the birth centre in for the "perfect" photo.
Just like that I delete it all. I need it off my phone. I prepare to put away my belly creams and look for my sanitary products once again, whilst trying to remember what it felt like to be me before I was pregnant, before my body changed and before I knew what a heartache like this would feel like. I need to make non-baby plans to get my heart out of this deep dark hole. I'm angry, I'm desperately sad, I long for the mummy I was a few days ago and loathe the place I am in today. The future is uncertain but what I've learnt so far is this, I have the most amazing group of supportive people around me, without judgement they listen, they cry for us and they are in this feeling our pain with us. We do not feel alone. Pregnancy is not certain, baby survival is not a given. It's a really harsh possible outcome to one of the most joyful moments in life. But no matter what happens in the next week she will always be my first baby, my Flo forever. My baby in heaven. I'm still a mummy and my husband is still a daddy. We just try to do our best to see out the long days and nights to get by together as a couple.
I'm lost and in mourning but I still love her.