1st of April 2016, April Fool’s Day- we were in the lift of the hospital and expecting our first baby. We were joking about how big I was going to get, and on the way to our 20-week scan. I remember so clearly the sonographer kept screwing up her face, my husband seemed blissfully oblivious and kept pointing out things on the screen; and then we’re being told our baby’s limbs are measuring short, and she wants to get someone more senior to check the measurements. The measurements were confirmed and we’re issued with an urgent referral to a consultant.
Then comes a weekend where we face a life of a baby we assume with dwarfism. We mourn, not because this baby is any less wanted, but because we know life is likely to be that little bit tougher for them. But the most important thing is they’ll be loved and we’ll get through it together. Days later we see the consultant, who before she even scans us again, tells us if the measurements the sonographer took are correct then our baby is seriously ill. The scan confirms everyone’s worst fears; our baby has a condition called Thanatophoric Dysplasia. A type of dwarfism that affects the development of the chest cavity- the baby won’t survive.
We’re taken to a room to begin to process the news. We find out our baby is a girl, and are given three options; a termination, a second opinion and/or blood tests to further determine her condition. We take the second two. Later that day we go to the London Aquarium in the hope of taking our little girl to some of the places we would have done in the future. It’s painful, yet there’s some comfort that we’re somehow doing something for her, however strange that might seem to others. Later that day, we sit on the South Bank and decide to call her Aurelia, which means golden, to reflect how precious she is to us.
After a week of reflection, more appointments, tests and affirmations our baby will not in anyway suffer, we decide to continue the pregnancy. Aurelia, we are warned, may not survive the pregnancy, or labour, but there is also a chance we may get a few precious hours with her alive after birth. Amidst all of this, we’d put an offer on a house out of London. So, at 28-weeks pregnant we pack up our house and move to Hampshire. A week later we welcome another new arrival, Lottie, the Labrador. My Dad’s dog had had puppies a week before our diagnosis, and we’d sworn we wouldn’t have one, but with the prospect of an emptier than anticipated house, we gave in.
The pregnancy is a strange one. We try and do lots of things to make memories. I’m in some kind of pregnancy fog where, whilst at points I have huge surges of grief and anger, I’m mainly, literally, glowing.
It’s decided I’m going to be induced at 35-weeks, and we’ll try and go for a natural birth to increase our chances of being able to spend anytime we have with her alive, with her. The hospital are amazing; we’re in a separate suite for parents like ourselves. We have midwives and doctors who show us such care. The night before she was born was, weirdly, one of the most special nights of my life. We knew she’d be born the next day, as it had been decided that if I didn’t go into labour I’d have to have a caesarean. So, for me there was this sense of anticipation that I was finally going to get to see my little girl. In the middle of the night we listened to her heartbeat and there it was, despite the odds, still beating, strong.
My body finally went into labour in the morning, so our little Aurelia arrived feet first into the world. She passed away minutes later on my chest. We spent the next few days in hospital, with her, holding her. Her grandparents getting the chance to meet her, taking her hand and foot prints, bathing her. They were the most special days of my life up until that point; and I saw, in those few days, the best of humanity. The care we were given by midwives was incredibly healing, in both the care and dignity they gave me, my husband and Aurelia. One moment stood out in particular, when one of the midwives, who had delivered her, came back at the end of her shift to give her a kiss goodbye. I’d struggled during the pregnancy, fearing people wouldn’t value, or be frightened of my little girl, because of her condition; so this gesture was immensely precious to me.
The worst moment was leaving her at the hospital. It took all my mental energy to make myself walk out the room and the hospital. I found the run up to, and the actual funeral okay. I was always okay whilst I could do something practical. Much harder for me was when the funeral was over, and a week later my husband went back to work. I was on maternity leave, with no baby; and it felt like everything had changed for us, but for the rest of the world nothing had. Anything that had previously helped me feel connected with my little girl was suddenly a torment. I remember putting on my seatbelt to drive the car one morning, and the fact I had no bump to arrange it round made me feel sick with grief.
In the midst of all this was our now, 5-month-old puppy. My instinct was to crawl into bed and not emerge for several weeks, but I had a puppy to walk, feed and train. I remember at points feeling so resentful that she was there when I felt like I could barely find the strength to look after myself; but looking back she was so important in helping me to grieve well. Cheesily I call her my four pawed angel. I think if it weren’t for her I would have just sunk into bed and into a spiral of depression. But having her gave me routine, purpose and joy.
Two months after I had Aurelia I was pregnant again. Every day, at the advice of a dear friend, I had to choose to hope rather than constantly assuming the worst was going to happen. I did everything possible to keep my anxiety at bay; this included (which I know for others might be very difficult) going to pregnancy yoga. At times this was difficult, as I worried mothers would see me as having some ‘baby loss germ’ they could catch.
George arrived eleven months after his sister, and was again another great source of healing in our lives. At two and a half now, he’s full of mischief and laughter. Last year we welcomed another boy, Henry. Life is sweet with them, and we’re so grateful for them, but there is a shadow at times over our lives. At birthdays, for instance, it’s hard not to look at our boys and think about what Aurelia would have been like at the same age. There’s a sense of our lives before we lost Aurelia, and then after Aurelia. I n the latter we feel like we’ve aged so much more than our years.
At Aurelia’s funeral we shared these words, which feel apt these days and I hope they ring true for others in the same situation as ours…
“There is nothing that can replace the absence of someone dear to us, and one should not even attempt to do so. One must simply hold out and endure it…the more beautiful and full the remembrances, the more difficult the separation. But gratitude transforms the torment of memory into silent joy. One bears what was lovely in the past not as a thorn but as a precious gift deep within, a hidden treasure of which one can always be certain.”