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. 

Remembering Ganya Lily and Zaria Dawn

The following are eulogies written for two very special sisters, Ganya Lily and Zaria Dawn. Both of these precious babies were Carried to Birth after a fatal diagnosis. They are loved and missed every day.

Written by Tanya Loewen-Watson

Ganya Lily - June 9, 2013

Thank you all for being here and showing us your love and support today and throughout these last several months. We are so grateful you have chosen to be here to pay tribute to our daughter’s beautiful, yet short, life. Your support and prayers have been evident in our lives. During times of trial one often feels like God is not near or answering and I have felt this way but knowing in my heart God is always close by. I kept a list of all the cards and gifts people have given to show tangible support and one day looking over the overwhelming generous list, said to myself, 'If I can't hear God right now, obviously He is still speaking to someone and others are still hearing Him and obeying His voice'. God has been faithful and good and shown that to us through all of you here today. Thank you.

Last October we came home from a rare date to a Petra concert and after Brent had gone to bed, I decided I needed to go to the drugstore. I took 'the test' and went to wake Brent and with the most excited silly grin on my face, I showed it to him. I got the biggest hug in response. We were going to have child #4; exactly what we wanted. A family close in age to grow up and play together. The joy was indescribable. We knew we were in for a zoo at home in the first few years but were ready to welcome the challenge. Ganya's life had officially begun.

We continued to be excited in the following months and had started to prepare for where baby would sleep and that never ending conversation about what will we name this one. However, on January 2 our world came crashing to a halt. I had a significant complication that sent me to the ER. I spent New Year's Day waiting at the ER and was sent for an ultrasound the next day. I was taken in and two doctors scanned our baby for an hour and then grabbed a box of Kleenex and took me a room across the hall. There it was explained that there were many abnormalities and one thing cascaded into another for problem after problem. She would not live after birth. They recommended I terminate. That was not an option. This was confirmed to me when I cried out to God in confusion about 'what to do' and I got a sense in my heart clear as day that said, 'I will take her when it's time, and it's not time yet.' I knew then it was my task to carry her and not scientifically knowing the gender knew in my heart we were having another girl. I was not surprised at all when that was confirmed by ultrasound.

I cried, oh how I cried. And the river of tears didn't stop for several months. We continued to prepare for our baby but in a whole different way. This was going to be the only life she had and we were going to prepare for what it was going to be. We prepared for there to be a photographer to capture her life. We met with a palliative care team and neonatology prior to her birth to make sure her life would be comfortable. We asked people in advance to help us celebrate her life here today. We named her and where most keep the name a secret until after birth, I said I needed to share it as this now was going to be her whole life.

Here's some background on how we came up with her name. One night after many tears, I came to Brent and sat on the floor in front of him and put my head in his lap and not yet knowing gender I cried, 'I need to name it Ganya'. With the many discussions of names, this one had come up because of what it meant, Garden of God, and I liked it especially as, on top of its beautiful meaning, it was a take off of my name. Tanya with a G. With that I thought of our child in God's garden and the theme of her life became flowers from God's beautiful abundant garden. But now she needed a middle name. Rose? No, roses have thorns. Daisy? No, that sounded too much like Daisy Duke. Iris? No, that just didn't quite fit either. So I started to think of scripture that had flowers. The only one I could think of was in Matthew 6:28-30 which talked about how God cares for the lilies of the field that are here today and gone tomorrow. He would then look after our daughter and continue to look after us. That was it - Lily was her middle name.

The day had arrived. June 9, with lots of love and support around us and amazing doctors and nurses guiding us, Ganya Lily arrived in our arms at 5:05pm. She and God must have had a chat about arriving on the day of my mother and father's 40th wedding anniversary, to honor them with the gift of her presence.

She was alive. Praise be to God, she was breathing and did not need the medical intervention to help her breath or for pain. God had spared her that. At this time it felt to me that her life was nearing its end. We had known that when she was born most of her life had already been lived inside of me. Now it was time to celebrate her 1 and only birthday. So we celebrated. We took turns holding and kissing her. I was able to do a mother's loving 'duty' of bathing and diapering her. We swaddled her in the blanket made with love, prayers and tears by her grandmother. We held her hands and kissed her toes and bathed her with our tears of 'see you later'. All this time was captured in detail by an amazing volunteer photographer from Now I Lay Me Down to Sleep. I will always be grateful that she was there to document Ganya's birthday.

Though God had only allowed her to be in our life for 1 hour, she was all along only 'borrowed' to us. I am very confused, however, at why God chose to only gift her to me for this short time if it means I will miss her immeasurably till we meet again in heaven. This has also brought me God's lesson that though I call my other children 'mine' that they too are only borrowed to me to raise for Him. And I need to continue growing to be His light in their lives.

It has been and will continue to be our prayer that God be brought glory by her life.

Zaria Dawn - March 19, 2014

Indescribable sorrow. Insurmountable pain. Our daughter has just died and now Jesus holds her hand while she waits for God to bring her parents home to her. Doctors say that the death of a child, especially a baby, is the worst psychological trauma a mother will ever have to overcome. But really, it must have been a fluke. There's no way this could happen again. There's no way God would let this happen again. And with all this sorrow - we needed a reason for joy. So, we have 4 children like we wanted but decide to have a 5th child so we can still have 4 running around us here.

We get pregnant right away and are once again overjoyed. We'll have 2 sets of playmates. We'll have chaos. We'll have the zoo of little ones around us but are once again ready for the challenge so our children can grow up close in age.

Week 10, I go for an early ultrasound as they want to make sure this pregnancy is not high risk. They see some complication that is a possible sign of Down syndrome and try to look for other symptoms but baby doesn't cooperate. That's okay. It will be a different challenge if baby has Down syndrome, but at least they will be here with us. Week 12, they look again. No, it's not actually Down syndrome there's a physical problem. If that's all it is - they can fix it but baby's too small to tell for sure if there more. Week 16, another look. I hadn't kept hope of things being okay because I didn't want to be disappointed. Then, we heard an echo of the past when they say once again that there is problem cascading into problem and this baby would also not survive after birth.

I was shocked. As expected, the question of 'why' resounded in my head and heart over and over again. Oh, how this stabbed my heart. But I couldn't process this immense pain so my heart shut down. I didn't feel angry or sad. After all, we still had 3 children here to look after who needed their mother to be present physically and emotionally.

So, having just gone through this journey, we prepared for our baby in the same way. We chose names. We needed both a boy and girls name ready as part of the complications made determining gender by ultrasound nearly impossible. So, we couldn't share a name ahead of time, which was tough cause I so wanted her life here, while I was pregnant, to be more present with her name known. We met with palliative care to make sure baby's short life would be as comfortable as possible. And we planned for their life to be celebrated by finding meaningful scripture and songs.

We were told that baby was most likely a girl so the name we found for her needed to have meaning. And it needed to fit into our theme. If you take the first initial of each of our children in order, you get S. I. N. G. Sing! So our word needed to be completed. But I also didn't want the same initial used. That meant the last letter would have to be a 'Z' to make a creative spelling. I started combing through names that started with Z and found one I liked but when I looked up the meaning it didn't connect. But a little further down the list, I hadn't even seen the name yet, but the meaning was 'Sunrise'. Oh, how perfect. Zaria also sounded beautiful. Sunrises are in the morning. Fresh starts. Beginning anew with light. Filled with hope. Though, feeling abandoned by God, I had to hold onto the hope that God's love and mercy would never fail, like the sunrise. So, now she needed a middle name. The only thing that fit was Dawn. Zaria Dawn. Perfect! I found confirmation of this light and hope in Lamentations 3:22-24 which talks about being sure of the sunrise and the Lord is all we have to be sure of so we need to continue to put our hope in Him.

As the days ticked by, the anticipation grew and so did my anticipated sorrow. I missed Ganya more and started to already miss the child that we were yet to meet. Yet, on March 19th she arrived in my arms. God's perfect creation. Zaria Dawn's life shone in my hospital room. We were blessed again with a photographer from Now I Lay Me Down To Sleep to capture her memory for us.

I saw her scrunch her eyes at the new world she had entered and heard her click her tongue a few times as she sucked for breath. She was alive! Praise the Lord! We just loved and snuggled her for what felt an eternity. But very quickly, dawn turned to dusk and I knew she had been taken home. 10 short minutes of life here on earth and she got to start her new life in heaven, join her sister in God's beautiful garden, and meet Jesus. It still feels unfair. I'm very jealous but will wait till called home to dance with them there. And continue with the task I feel I'm called to - being the best mother I can to the children He's borrowed to me here. And purposefully grow in the knowledge and love of Christ, so I can be God's light in their lives.

It has been and will continue to be our prayer that God be brought glory by her life.

~ ~ ~

Tanya Loewen-Watson is a Stay at home mom. She is married to strong loving Brent and mother to 3 1/2 year old twins, Sarah and Ivan and 2 year old Nadia. Also mother to Ganya and Zaria already in heaven. Her angels were both diagnosed early in pregnancy with fatal complications and carried until 36 week where they spent very short earth lives never put down and are carried forever in our hearts and surrounded by our love.

How to Know When to Say Something

By Christine Russo

When do we, as mamas who choose to carry to birth, know when to tell people about our precious child's ill fate? It's such a confusing and sometimes uncomfortable discussion to have, and most of the time we're blindsided by it. "Oh look at your sweet belly! When are you due?" Or "Is it a boy or a girl? Are you so excited??" Or "You're probably so ready and buying tons of cute clothes!" Well-meaning sweet people all wanting to know about our growing bumps are potential emotional land mines in a day out running errands, potential triggers that could cause us to lose it at any moment. We can't blame them, they don't know any better. I was once as blissfully unaware as they. Completely innocent and naive to the world of fatal diagnoses in the womb as so many are.

There were days I would show off my belly and just beg people in my mind to talk about my pregnancy. On those good days, I wanted any chance to talk about my precious girl. Those were such beautiful times and I cherish those memories. Then there were my bad days when I would try to hide my belly (as much as I could after week 18) and avoided any situation where someone might say something because I knew on those days, I would break down. I remember how hard it was for me to know when was the 'appropriate time' to tell someone new about Gianna and sometimes it led to me secluding myself.

There were situations where I had to lie; I had to pretend everything was perfect. And boy did those conversations eat away at my soul. Slowly chipping away at the small amount of innocence I had left. It always left me feeling not only sad, but a little bitter. Bitter in knowing what SHOULD have been with my dear Gianna. Once on a bad day, I encountered a woman at a party who didn't know our daughters diagnosis and wouldn't let my pregnancy go. I tried to be short and to the point with my answers (which was horrible because I should be so incredibly excited about my girl) but she always came back to talk more. Finally I knew I had to say something because even people around me who knew looked uncomfortable. I finally said, "I'm so sorry, but she isn't expected to make it after birth." The poor woman looked humiliated. I was humiliated and could feel the hot tears about to flow. So I ran. I ran upstairs, hid in the bathroom and cried. It ended up fine, but it's so hard to go through when you're ready to break at any moment.

I eventually came to a point where I was comfortable with my own tears and feelings. I came to the realization after speaking with several bereaved mommies who have been there before that it's ok to let your real emotions out, even with strangers. Sometimes, grief needs to be witnessed to be healed and, although it didn't help me 'heal' while I was carrying, it made my heart happy to share about Gianna in an honest way. Now I look at those hard moments as things Gianna and I conquered together. She gave me all the strength I needed to get through those hard times. She made sure I was a brave mommy.

It's about whatever YOU are feeling in that moment, there are no right and wrong ways to handle these encounters. Whatever you need to do that day, whether it be hiding out or sharing your precious baby with the world, then do it. Stay true to your feelings and ride those waves of emotions because in the end, this is the only time we get with our angels. Be gentle and understanding with yourself.

~ ~ ~

Christine Russo is a wife to an amazing, supportive husband, and a mommy to Angel Gianna Marie, her first and only child. She carried Gianna after receiving a fatal diagnosis halfway into her pregnancy. Through the love and spirit of their special daughter, who means the world to them, they wish to help support other families who have to say goodbye to a piece of their heart.