This Time Last Year: Learning About Hydrocephalus

September 8th, 2016 I drove to our high-risk specialist for a twenty-two week check up on Uriah. I remember feeling pretty good about our appointment; it had been at least four weeks since my last emergency room visit where I lost blood and thought, for the third or fourth time, I was miscarrying. Although, to be honest, we had had so many difficult issues in my pregnancy that getting an ultrasound always made me feel slightly uneasy — like, today might be the day I again learn something is wrong.

But we were doing okay; my subchorionic hematomas were disappearing, my misdiagnosed miscarriage was beginning to be a past memory, and we had a closet full of little girl dresses for our daughter. (Since we had been told it was a girl a few weeks prior).

I settled onto the little recliner and let the technician wave her ultrasound wand over my growing belly; we chatted but I could tell something was wrong. Small tears trickled down her face as she tried to remain professional. A sinking feeling settled in but we pushed through the exam. When I told her we we’re expecting a girl and asked for a confirmation I got to experience one of those funny moments when I’m told, “No, it’s a boy; see here?” I laughed to myself because, why shouldn’t the gender be wrong; it had already been a chaotic first pregnancy why not add a little comedy to it? I imagined naming him Isaac for laughter since it was too silly not to laugh.

She left and it took an abnormally long time for our doctor to appear. Again, the sinking feeling filled me. I had seen tears, hadn’t I? Eventually, the specialist arrived and, by the look of his face, I knew I could ask confidently, “Something’s wrong, isn’t it?” He asked me how knew and I commented on his very sweet but teary-eyed tech. He nodded, I asked to get off the recliner and sit in a real chair. Bad news shouldn’t be received while reclining.

Your little boy has a condition called Hydrocephalus. His brain is being compressed. His femurs and thigh bones are measuring short. This often goes hand-in-hand with trisomies. Like Down Syndrome? Yes, or Trisomy 13 or 18; both are incompatible with life. You’re son will need to be born in a specialized NICU by c-section; I recommended delivering early in a hospital in St. Louis. 

What do we do now?

There a number of tests we could take to rule out the possibilities of trisomies but I’ll be honest, they run a risk to the baby and premature labor. I won’t even offer a termination because I think you won’t accept one. You mean an abortion? No, we wouldn’t considerate that. We’ll need to do weekly ultrasounds to keep track of the baby’s head circumference and growth.

I’m not really sure what happened after that; I know I thanked him for his kindness and confidence in our God Who believed all life deserved to be born. I also told him to thank the teary-eyed tech for being so kind.

I scheduled the next appointment, walked to the car, unpeeled a banana and began to cry over that messy breakfast. I cried and I cried. I wanted to call Dalton but he was working and I hate giving him bad news over the phone. I wanted to call Mom but knew I wanted to talk to Dalton before anyone else. So, I called my wonderful friend and husband. The good news is that you’re having a son. The bad news is that there are some problems with his brain and bones. Maybe a Trisomy like Down Syndrome. Can you come home?

The day proceeded slowly; I cried while I drove home. Cried over how unfair it was to receive more bad news. Tears over the thought that my precious baby could be suffering that moment. Fear of the c-section and grief of losing the home birth we wanted. Tears because what did this mean for our little boy? What did a compressed brain mean for his future? What did a Trisomy mean? Could we really be one of those families who experience a child born incompatible with life?

The rest of the afternoon was spent at home with Dalton, who is an amazing comforter. I remember our land-lord showing up to do some painting in the house and Dalton asking him to come back later, we just got some bad news, he said. We chuckled over the gender mix up and ate ice cream, exhaustion filling our hearts.

I talked with our parents; telling them about the dubious medical diagnosis. Mom and Dad worked with some wonderful friends who had a precious daughter with the same diagnosis. They quickly called them and received the amazing love and understanding and practical advice you get from someone who has been in your shoes. Mom and Dad called back and told me about the connection and repeated the hope our friends had given.

And then I went to bed. The day had ended and we had survived. This precious baby boy with difficulties was still growing, still miraculous, and still ours. I’d spend the next few weeks re-writing my new birth plan to include a c-section and NICU two hours away; I’d google Hydrocephalus and then wish I hadn’t. I’d feel moments of pity and grief. I would write this blog post and we would begin to receive countless prayers and love from our friends and family. I would connect with a private Facebook group specifically for those with Hydrocephalus and I would be embraced by an amazing community. I would write this post 8 days after our ultrasound sharing all the blessings God was sending our way.

Little did I know my water would break in 10 days.

It’s amazing to be one year from this event; it feels like yesterday. Maybe that’s because our live’s went on a 9 month pause?

Yet, if given the chance, I would change none of it. Yes, it hurts. Yes, it’s hard. Yes, I still cringe when I think of the memories. And yes, I wish I could make easier on Uriah.

But look at this precious baby. Look at what God has done in his little life. Look at the joy, the fun, the sweetness, and the miracles he has given us. 

I imagine that this time next year the bad memories will hurt a little less and the new ones, the memories we make this year, will be closer to the surface. I want Uriah’s first library visit to be the memory I think of this time next year. I want to remember the friends we’ve grown closer too and the family too. I want to reflect on how adorable and healthy Uriah is and how blessed we are.

I hope my reflecting over the past isn’t turning into a broken record for you, sweet readers. I process life through words and writing and, to be honest, I don’t know if I’ll ever get over the hurt broken dreams bring. So I’m sorry if my reflection bores you; but this is how I work through life’s experiences. This is how I ponder God’s hand and how I move on from the pain and rejoice in the midst of it. I admit I’m still learning to get over the hurts and difficulties  but I thank God for His perfect will and plan for our lives — including all of the pain He’s helped us walk through.

With love, blessings, and coffee, 

Frannie

2 thoughts on “This Time Last Year: Learning About Hydrocephalus

  1. Frannie, it is never boredom that I feel when reading your posts, but deep admiration for you and your husband. You have been through so many traumas and come out praising God. Your little boy looks a delight, and although you may have a way to go with his medical issues, you will, I’m sure , remain strong in the Lord.
    I do pray for you and think about you and your family.

  2. Your writing is never a bore. I love you Fran bot butt face McGhee…. It feels like yesterday all of this came to light and I am so thankful you were/are so strong for your family. I probably wouldn’t have been so tough 🙁 I am sorry if I haven’t been there for you this past year as I should have been and I am sorry if meddling and asking other people about your situation exacerbated your pain and fears (you know what I mean). Anywho. I love you and miracle baby Riah.

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