On February 9th my husband Grant, my 1.5 year old son Finlay, and I went to Santa Fe for a routine 20 week ultrasound. The ultrasound went very long, and at the end the sonographer brought a doctor to the room to tell us that our second son has a birth defect that is “not compatible with life”: he is missing most of his skull and brain.
We had to wait almost a month to see a specialist in Albuquerque, and on March 6th we received the official diagnosis: our son has three defects: anencephaly (missing most of his skull and brain), an umbilical cord defect (one less artery than normal), and a hole in his heart. I was also diagnosed with polyhydramnios (excessive amniotic fluid).
Anencephaly is obviously the major defect present, and it means he will either die while I am pregnant with him, during labor, or shortly after he is born (hours or days). There is a very small chance he could live long enough for us to take him home for a few days or even weeks. We really have no way of knowing what his outcome will be.
We named him Royce Quill. Royce means “son of the king”, and we know with certainty that this child is a son of God. Quill means “bear cub”, and since we will never know him as an adult, he will always be our little bear cub.
For two weeks after the first ultrasound, I lived in a complete haze. I honestly don’t know if I can remember many details from those two weeks. After that, I began to slowly attempt normal life activities (like grocery shopping without bursting into tears……..sometimes), but life is still hard and dark. I feel despair and loss almost every minute of the day, even during the brief moments when I feel slightly happy and normal. But through every emotion, thought, and feeling, there has been an underlying theme: you are loved.
Royce Quill, You Are Loved.
When we did our second ultrasound on March 6th, RQ gave us a little gift: we watched him playing with his hands and sucking on his fingers. He is not a vegetable, despite his massive lack of skull and brain. In fact, while he is still in my womb, he is very much like a normal little baby. He will potentially experience seizures in utero at some point, he can’t really swallow, and he does look different. But aside from that, he is a normal baby rolling and kicking away, sucking on his fingers and discovering his small world.
All that being said, we would love him even if he couldn’t kick his tiny little feet or suck his fingers, for one simple reason: he is ours. We have wondered whether or not we’ll try for a third child after we lose RQ. But right now, all I can think about is how much I don’t want another baby; I want him. I can find a little bit of rest and relief in knowing that this child is so wanted and so loved. And not just by his mother and father. We are not the only people who have cried over the loss of this child, and desperately wished we could keep him for longer. We have been surrounded by friends and family who feel just like we do.
Royce Quill, you are so loved by your parents, brother, and so many others. If that is the only thing I can give you in your short life, let me be satisfied in that.
Jamie, You Are Loved.
I am sad. I am covered by a darkness and heaviness that is inexplicable. No parent should ever have to lose a child. No parent should ever have to spend time preparing for the loss of their child, calling funeral homes and getting estimates for cremation, trying to figure out how long you can hold a baby after he has died.
And I do feel alone. We are hundreds of miles from our friends and family, 1-2 hours from medical care, and 1 hour from any sort of grief counselors or loss support groups.
But I am not abandoned. Rather than feeling like God has punished us, or forgotten about us, or left us to carry this grief alone, I feel more loved than I ever have. When I am in my darkest moments and feeling my deepest desire for RQ to live, I feel God there. I feel convinced that He has experienced inexplicable sorrows, and one of them is RQ’s brokenness.
I am not alone in grieving for my son. God is grieving with me, and possibly even more deeply than I can imagine. I am loved.
Parents, You Are Loved.
Full disclosure: I am pro-life.
Many mothers who carry babies with lethal birth defects like RQ choose to abort their babies or induce early, so there is obviously a moral and political aspect to what we are experiencing.
There will be some people who are pro-choice who think what we’re doing is ridiculous. I am putting my life at risk (every pregnancy is a risk) for a child that will absolutely not live. I am using the medical system for a child who has a terminal defect.
There will be some people who are pro-life who think what we’re doing is a symbol to all other mothers with terminal birth defects that they can and should do the same as we are. They see us making some sort of statement to the world.
To those pro-choicers and pro-lifers, I want to tell you something: you’re missing the point.
So instead of talking to those people, let me talk to every single mother and father who chose to have an abortion, or considered an abortion and decided against it, or induced a pregnancy early, or carried a baby knowing that baby would die.
You are loved, you mothers and fathers. But more than that, you are worthy of love. I don’t know what it’s like to consider an abortion because culture forces you to, or because your family situation forces you to, or because you have no money, or because the child will have no family. But I do know what it’s like to be presented with the option of early termination instead of spending five months carrying a child I know will die, and then potentially having him die in my aching arms.
I don’t care what you chose. I don’t care if you chose the abortion or to have a baby that will drastically change the rest of your life. I don’t care if you chose the early induction or to carry a baby who will die. Whatever decision you made, you were in a position that no parent should ever be in.
And whatever decision you made, you are still worthy of love. I love you whether you carried or aborted. God loves you whether you carried or aborted. Please take one moment as you finish reading this blog to feel loved and not alone.