Diagnosis

Our first indication something was wrong came in the form of a voicemail. About an hour after Garret and I got home from my 20-week anatomy scan, I saw that I’d missed a call from our midwife. I casually hit the play button and put the voicemail on speaker as I settled back at my desk. I was expecting a 20-second message telling us that the scans look normal, just like I’d gotten after my anatomy scans with Arlen and Jonah. 

But I knew instantly that this call was of a different nature.

My midwife’s tone was somber, apologetic.

She said I needed to call her back immediately.

She also strongly urged me to have my husband by my side. 

Garret listened to the message, prayed for us as I tried to gain control of my breathing, and we made the call. 

We learned that the radiologist had serious concerns about our baby’s brain development. Or, more accurately, nondevelopment.

We were being referred to specialists at Maternal Fetal Medicine. Someone would call us right away and schedule the first available appointment. We would meet with geneticists, get in-depth scans of our baby’s brain, and “discuss options.” 

We were told to plan for a long appointment. 

We were also told we would need support. 

This pregnancy had been so similar to the last two. Nothing in my prenatal appointments had raised an alarm–our baby had measured, moved, and done all the things just fine at my dating scan at ten weeks. Heart rate had always been right where it should be. I’d been feeling movement for weeks and weeks by this point…we were visiting friends in South Africa while I was 17 - 19 weeks pregnant, and I was thrilled while we were there to feel more pokes and prods from the baby, not just flutters. One night when Garret and I facetimed with our boys, who were back home under the care of Gammy, I told them I was feeling their little brother or sister kick. Our three-year-old, Arlen, was about as thrilled as I was. I couldn’t wait to have him feel the movement once we got back home.

And yet, the scans showed what they showed, and the call came. 

We met with the specialists the very next day. And, at the end of an appointment that was indeed long, we got our diagnosis: Holoprosencephaly (or HPE).

Three professionals agreed from looking at brain and facial scans that our baby has the alobar subtype of HPE, which is the most severe of four types. It is very rare (1 in 100,000 instances in babies, both born alive and stillborn). We also learned that our baby is tiny, measuring in just the 6th percentile, so in addition to our baby’s brain not developing, there is a serious concern that he or she is not getting the nutrition they need. 

There are three outcomes we've been told we can expect:

1. Our baby may not make it to term

2. Our baby may not make it through labor and delivery

3. If our baby is born alive, he or she will not live long outside the womb. Quality of life during this time will be extremely low, seizures and feeding issues are to be expected, and pain management will be needed.

We were given these projections in the order listed above, and as they fell on our ears, each seemed worse than the last. My heart and mind couldn’t bear to think about our newborn baby suffering, whether for two hours or two weeks. 

We were also told—but not given specifics, as our doctor was sensitive to the fact that we can only bear so much in one day—that if we made it to term, our child would be born with significant facial abnormalities we’d need to be prepared for. 

Of the three outcomes we were given, we really aren't sure what is most likely. Our baby’s diagnosis is fortunately very rare, so there’s little data as it is. There’s even less after 20 weeks because, as our doctor gently informed us, most couples in our situation choose to terminate.

We are choosing to trust God. 

I wish I could say this decision came easy to us, that it was made purely in faith. 

But faith is not something that came easy to us when we only saw loss in our future. Seeing the words “incompatible with life” in our sweet baby’s diagnosis siphoned the faith right out of me. 

Those first days after getting our diagnosis were the darkest in our lives. We thought things, considered things, and felt things that I never would have imagined of myself. But in the lowest of lows, God gave us the presence of mind to talk. He gave us a lifeline through family and friends who’d always been mentors in our lives, who reminded us of who He is and what He can do. Who covered us and our sweet baby in prayer. Who stood in the gap for us, assured us what we were feeling was okay, and pointed us to scriptural truths. 

One that really helped me during this time (and still does) was the story of Jesus healing a demon-possessed boy in Mark chapter 9. To give a quick summary, a father brings his son to Jesus and tells him he’s been possessed since childhood, and the demon would throw his son into both fire and water to try to destroy him. He asks Jesus to have compassion on his son and help them, to which Jesus responds, “If you can believe, all things are possible to him who believes.”

The Bible tells us that the father cried out after hearing this. Through tears, he said, “Lord, I believe; help my unbelief!”

We so identify with that father, his heartbreak, and desperation to see his child saved. 

With his struggle with unbelief. 

After I first shared our baby’s diagnosis with my small group, one of my friends read this very scripture to me. She reassured me that we have a savior who does not walk away from our unbelief. In the days and weeks since, that truth has become more real to me once again, and I’m grateful to her and all the people we have spoken truth into our lives. 

We also were led to meet with one of our pastors soon after getting our diagnosis. He said something that I’ve found rings very true for what we’re walking through: This is such a hard way to experience that our children belong to God first. 

Lately, I’ve been reminding myself throughout the day that God loves our baby even more than we do. It’s a truth I’ve already reflected on many times as a mom. Some seasons, I’ve had to meditate on it more than others, like when both our boys were just starting daycare or when Jonah was in the ER with RSV as a newborn. I’m sure any parent would agree it’s a hard concept to grasp, that anyone could love your child more than you do. 

But God does. 

We know that He created our baby, knows them by name, and has a plan and purpose for their life, no matter how long it lasts. Even though we are having trouble believing for a miracle on this side of eternity right now, we have no doubt that God has gone before us in this journey, and that it will ultimately end with our baby’s complete healing in Heaven. 

There’s a lot of uncertainty in the days and weeks to come, and we are humbled by the many family members and friends who are willing to walk this with us however long this lasts, sharing in our grief and joys along the way. Thank you so much to everyone who has cried with us, prayed with us, distracted us, and brought us meals, flowers, cookies, and books. Even though the days have been clouded, we see with full clarity how our community is being the hands and feet of Christ for our family right now. And we are so, so grateful. 

Many people are asking us how they can help support us through this. If that is you, again, thank you! There will likely be a time when practical forms of help will be needed, but our main need right now is prayer. A few specific things we’d greatly appreciate prayer for are:

• Miraculous healing for our baby

• Discernment and peace for healthcare decisions that will need to be made along the way

• Protection for our children’s hearts, particularly Arlen’s, who is so excited to have another little sibling and knows nothing of this diagnosis yet

• That we would be able embrace the joy in however long we get to be this baby’s mom and dad here on earth

• That Garret and I would stay united in our marriage and parenting, and that we would not give Satan a foothold in this journey 

Thank you again for everything. There are no words to express how grateful we are to have our community to lean on during this time.