We found out about our little girls condition at our 20 week scan. It was easily one of the hardest days of our lives as our world came to a total standstill, after all, this little baby was all we had talked about day and night. We didn’t want to find out the sex but given the circumstances we felt that we needed to know to develop a deeper bond with this special little baby in my tummy.
A little girl. A little Freya.
A month after the diagnosis I wrote her an open letter and shared it on Facebook for everyone to read. In a way it helped me cope and the loving support we received after that was totally mind blowing. It read…
It was on the 20th September 2018 that your daddy and I went for our big scan. We were so exited to see you, after all, day and night, you were all we ever talked about.
First we got to see your heart. It was beating so strong we were undoubtedly proud of how far you had come along. To us, you looked perfect.
With the aid of an infrared scan, we even got to see the blood flow in and around your body and then back out through the umbilical cord again. And I thought to myself, how could something, something this common, be this amazing?
It was then that the nice lady who conducted the scan, went quiet. Very quiet. Too quiet.
The friendly smile on her face withered into a faint, frail frown. The sadness in her eyes was apparent but I still didn’t expect her to say what she said did.
“There’s a problem. It’s a big problem. Your baby has anencephaly.”
What in the world was that. I was quick to ask her. I wanted answers. She told us you had no skull to protect your little head. Well I’ll just have to be extra gentle with you then, I thought to myself.
And then she told us. It was fatal.
What? No… Surely that just cannot be. “Are there any survival rates at all?” I quivered. To which she answered, shaking her head, “I am so sorry.”
I no longer felt like I was lying on the bed but floating helplessly around the room. My body quickly covered in pins and needles, my chest tight till I almost couldn’t breathe, my heart pounding faster than yours.
“There are a lot of mothers who have gone on to terminate their pregnancy with this particular diagnosis.” I glared at her in disbelief.
She continued, “If you’re ok to wait, I’m going to go and see if the doctor can come and see you.” And before leaving, she went into her drawer, pulled out a packed of tissues, and left us to our thoughts.
Your daddy grabbed my hand and together we sobbed, trying our absolute hardest to keep it together, not only for us, but for you, and your big brother. We tried, really hard, even though it felt as though our whole world had just been torn to pieces.
After waiting for what seemed like forever, she returned. I asked her this time if she was able tell if you were a girl or a boy. So she agreed to scan me again. We had initially planned on keeping it a surprise, but after being given such devastating news it only felt right to ask.
We couldn’t believe it. A baby girl. It hurt a little harder.
Soon the doctor came in, introduced himself and escorted us out of the room and into his own. He took me for a third scan only to confirm what we had already been told. You had anencephaly.
This time you rolled over and I got to see your face. I remember how small it looked. Your head is tiny in comparison with the rest of your body. He asked me if I could see that. I told him I could.
So off the table I got and sat back down at the doctors desk. He asked me if I knew what anencephaly meant. I told him exactly what the sonographer had briefly told us. He explained further that you also had an underdeveloped brain and that you would not survive outside of my womb. Again, we were reminded, that termination was an option for us.
“I couldn’t,” I abruptly told him. He apologised sincerely. I could see that he was also hurting for us. He booked us a further appointment for the coming week for us to confirm our decision, about what to do next.
Dear Freya, there was no decision.
It’s been exactly one month since your diagnosis. I think it’s safe to say that we have been utterly distraught since that very moment. We’ve had our ups and downs. Some days I’ve got dressed, done the shopping and gone to see friends. Other days I haven’t got up at all. We have been praised for being brave, but it has been undeniably difficult to come to terms with.
This week I would have been flown to England had I wished to terminate you. And the reason I’m still here is because it’s not only my pregnancy. It’s yours. It’s your daddies.
I think about you every day. Some days I can’t even begin to fathom how this could happen to us, better yet how it could happen to you, our sweet, sweet baby girl. You are the face of both innocence and unfairness.
Now, the only joy I feel is concealed in the short moments that I feel you roll and kick. I like to think that when you kick extra hard, you are reminding me that for now, you are alive and safe in the maternal protection of my womb.
It’s been 4 weeks since we’ve seen you. Our next scan is on Monday and to be honest I am terrified. Our future remains bleak and uncertain.
We planned your life not knowing that we would very soon be planning your funeral.
Given the opportunity, I would wholeheartedly sacrifice the rest of my life to look after you. The special wee person that you are. And if that meant never going out again? Done. Never able to see my friends again? You got it. Round the clock care? Say no more. I’m your woman.
No one wanted anything more than we wanted you.
Mummy & Daddy”
We tried to come up with ways to honour our special little girl and make memories with her to last a lifetime. One thing I was certain on, I wanted a baby shower. Though, it didn’t seem rational to have a regular baby shower where guests shower mummy and baby with gifts. Instead, we had a party upstairs at a local family bar and restaurant. We invited family friends and anyone and everyone to join us for food, drinks, cake and a whopper of a raffle, all in aid of some charities who had been helping us along the way. Every Life Counts, our main source of support, is a perinatal hospice charity in Dublin, whom without, I don’t think I could have coped at all. Together, my partner and I raised roughly £3000 for charity, and although I was beat with the crushing effects of polyhydramnios, I managed to dance the night away, ultimately having the best night ever in aid of our baby Freya. After that, the weeks flew in so quick. You hear pregnant mums all the time saying their pregnancy feels as though it lasts forever, but mine didn’t last long enough. At 31 weeks, I was admitted to Altnagelvin Hospital in Derry, where I spent a week bowled over in pain. My kidneys had been getting a rough time from all of the pressure of the extra fluid. I was in agony. But more importantly, I was scared that she would be making an early appearance. If I could have kept her in there forever, safe and sound, I would have. On Friday the 7th of December, we had our little girl. Our darling Freya. She took all of her features from her daddy, from her nose to her toes. She was absolutely beautiful. Our little angel lived for two minutes, long enough for her to open one little eye, gaze up into mine, and grip her daddy’s finger. A moment that will hold our hearts for a lifetime.