Henry's Story, by his mama

Written by Katie Butler

I've been struggling with writing our story down. I feel like writing it makes it real, final. I've been blogging about my feelings and how we've been coping since the beginning – but writing it down? From beginning to the end? That makes it final. That makes it true that he’s gone, and that I’m not going to finally wake up from this dream. It also fees abridged – how can I fit my son’s lifetime into one post?

It feels like a dream, sometimes. One of those sharp, incredibly real dreams that I used to have. I don’t dream much anymore. I think my brain is just too tired. I remember being so very, very excited when the pregnancy test showed that lovely little positive sign. I remember celebrating with my husband. I don’t remember how we told our families. Maybe it was just a call. I don’t know. I remember being excited that our daughter would have a little brother or sister to grow up with.

I remember spotting a little bit, early on. I remember being told that it’s perfectly normal, that everything was looking good after an early ultrasound to check on baby. I remember completely trusting, completely sure that this pregnancy would be just like the last – unremarkable and perfect, ending with a gorgeous little girl. Except, I also knew that this would be a boy. It just was.

We had our twenty week ultrasound on a Friday. My friend was the tech, and she had us switch machines – from one ultrasound suite to another. There were some images she couldn't get, but, I didn't care – it’s a boy! My husband and I had names to argue about! Oliver, or Henry? Our ‘argument’ was more celebratory and loving, more teasing each other to get the other to agree that one name was above the other.

I went home from work that night (I worked in the OB/GYN clinic – so after my ultrasound I walked back to my desk for a few hours) and took a nap. I missed a call from my doctor. My baby had ‘cystic images’ on his brain; we needed to get in with a Perinatologist on Monday for a level two ultrasound.

Of course, I goggled it: Cystic images. Brain cysts. I read enough to terrify and placate me at the same time. It could be nothing, or everything. That’s the glory of the internet, I suppose. I spent the weekend with a vague feeling of doom, unease pushing against my bubble of happiness.

My life felt perfect until this point; I was married to the man of my dreams, we had an amazing daughter and a son on the way. Everything fell into place for our happily ever after. My husband told me to stop worrying. My mom did, too. “Everything is fine – they just need more images.”

But I knew. I knew. Something was wrong. How bad, I couldn't guess. But something. I worried that maybe our son would have special needs. Monday came, and I was fit into the Perinatology schedule immediately. My husband came up, and my mom came to watch my daughter while we went in for the second ultrasound. 

I don’t think I took a single breath that afternoon. The technician was methodical, working from toes up. I cracked jokes. My husband and I argued over our son’s name some more. The doctor came in. Again, I worked with all of these people. We had celebrated holidays together, taken lunch in the break room together, sold each other our kid’s fundraising items, laughed and joked. Our doctor is a very compassionate man, and he took my hand while he explained that he thought our son has Holoprosencephaly, and possibly Dandy Walker Syndrome. “Oh... so, he’ll have special needs? We can do that.” We can’t know until we do an MRI.

I found myself at another hospital later that week, an MRI beaming through my skin into my son’s little body. My eyes squeezed shut, trying not to panic. The next day, we met with my perinatologist again, another quick ultrasound scan. The diagnosis was Semilobar Holoprosencephaly (HPE). Again, I asked what sort of needs he was going to have. Would he be incontinent? Would he be able to go to school? The special kids always walked around the track – well, galloped around the track in my school days. They were joyous and sweet people. I wasn't terrified of that. I just wanted to be prepared.

“Katie, this is worse. I don’t expect him to survive long after birth.”

It’s kind of funny, but in a bang-your-funny-bone way, that I can pinpoint that moment as the point where my world ended. My happily ever after shattered on the tan laminate floor of that dark ultrasound room. I sobbed. I held it together as much as I could, but I couldn't hold in that sound you make when your heart is wrenched away.

My coworkers, doctors and nurses and staff alike, were amazing. I was sent home for a few days – I don’t think anyone knows how to act around the woman who just found out her baby wasn't going to live, especially when she worked strictly with other pregnant women. But I don’t remember any of my time at home. I remember reading all I could about HPE online. I read the diagnosis, what it meant, and then I found all of these lovely, heart-warming stories about kids who beat their diagnosis. Kids who defied what their doctors said – that they were only expected to live for days and LOOK now, they’re twenty! Miracle stories, everywhere I turned.

False hope. We met with a neurologist. The top in his field. I did my research – I always do my research – he was the best. “I've never seen a case this bad.” “Hours, maybe a day or two.”

We were given the option of terminating. We thought about it – and then we made the hardest decision to date. We decided to carry our baby boy, our Henry, to term. We decided to meet him with love, and make his markedly short life as beautiful as possible. We decided on no interventions, because we wanted his life to be free of pain and full of beauty and love. I was firm on this; I remembered my grandfather coming off of life support and making me swear to never let ‘them’ do that again. He thought it was painful and cruel. I will always remember that promise.

I spent most of my days screaming inside, but smiling outside. I worked with the public, it was necessary. I pretended that everything was okay. I answered shortly when asked about my baby, trying to word my answers in such a way to get them to stop asking me questions. I could go on and pretend life was okay, as long as I didn't have to say it out loud. When I did, my heart broke again, and again, and again. My sweet, sweet boy. There is no easy way – so I just answered truthfully, and woe unto those who asked too many questions.

Henry developed hydrocephalus around 30 weeks. By 35 weeks, it was dangerous to continue the pregnancy – labor could have killed us both with how big his head had gotten. My boy was delivered via cesarean on May 21st, 2013, at 10:03 am. I remember being so shocked at how beautiful he was.

We planned so much for him, but tried to be mindful of the time we had – it could be minutes, hours, or days. He breathed for fourteen hours. In that time, my whole family was able to hold him. He was able to meet his big sister, get kisses from grandma, snuggle mommy and daddy, walk in the garden with grandpa, and get tickled by his uncles and aunts. He had his birth and life documented by a fantastic photographer, sent to us by Now I Lay MeDown To Sleep. He had a bath, had his hand and footprints taken. He got to do his first and only craft project with his big sister (their hand-prints, together, in a clay heart). My coworkers, friends, and doctors came through.

I still remember the way his skin smelled – perfect, new baby. He was perfectly formed. My boy – my lovely, lovely boy.

He started to fade. Just after midnight he took his last breath. My husband held him, and I remember his whispered, choked words – “He’s gone.”  I remember wailing. I remember being terrified to hold him – something I regret to this day – and I remember my husband walking him down to the surgery ward, where our son would gift his organs to other babies. Our hope was that at least one parent wouldn't face the reality that we were living.

I’m still heartbroken. We have friends with children born close to Henry – it’s hard to look at them. When I see families with a one year old boy and a three year old girl, I die a little inside. Weddings are especially hard – there is always a speech by a sibling. “Thank you for being my best friend, my enemy, my confidant… my sibling.”

I rage some days, because my daughter was cheated of her brother. The other days, I’m either raging that my husband lost his son or that my father lost his grandson. I try not to think about myself – because that’s where it hurts the most. I try to keep my heart happy – my daughter helps with that – but I try so hard to keep myself from diving into that well of grief that has been filling in my core. I’m not sure if it ever goes away. I don’t know if I want it to – it’s a reminder of my Henry. Our Henry. Our angel.

Losing your child is not fair. It’s not okay. You will be changed forever. In the moments where I feel like I’m drowning in my grief, my own personal well, I remember that we did all we could to make his life beautiful. He breathed the air. He smelled the flowers. He was loved. So very, very loved. I still remember him, breathing in my arms, snuggling against my chest. I remember, and I miss him every moment in my soul.

It was all we could do, and we did it as well as we could.