Editor’s Note: The following is a letter written by Erin O’Hara to her preborn daughter Freya, who was diagnosed with anencephaly — a condition in which the skull and brain do not properly form. Most children with anencephaly die at birth or shortly after. Many doctors advise abortion. O’Hara chose life for her daughter, saying, “I can feel her moving, kicking and rolling around in my tummy, reminding me every day that she is there. When she passes away, we want it to be peacefully in our arms, therefore we have made the decision to carry her to term. […] Our hearts are broken and all we want to do is wake up out of this nightmare, but we will continue to be there for our daughter till the very end and will cherish every moment we have with her.”
It has been one month exactly since we were given Freya’s diagnosis and coping mechanisms have been a matter of trial and error. Today I have written her a letter which I am going to share in hopes of raising awareness for this heartbreaking condition.
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