this is motherhood {too}: a Journey of Hope with Hydrocephalus.

October 10, 2013, Michaela Evanow, 9 Comments
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People always ask me when they hear my daughters story if we ” knew” she was sick when we named her. The crazy part is that we didn’t.  Journey Hope was born on April 7, 2000 after 32 hours of crazy labor. She distressed at hour 16, and came via c-section hours later. We were young, first time parents. We had been living in Switzerland, teaching and living our dream when we found we were pregnant. This was not our plan! We had signed contracts for three years and “planned” to start trying after that. Kids were not on our radar. Then I found I was pregnant and our dream came to a quick halt.
We came home to Canada and settled down to have our baby. As is often the case, our plans are usually not God’s plans. We adjusted to the thought of being parents. We were excited, we were scared as all first time parents are, but we were happy. Our baby girl Journey was the happiest little thing. She slept well, ate well, made everyone around her smile and I was in heaven with this chunky little girl.
At five months we flew to Ireland to be in a friend’s wedding. Total strangers were commenting on the size of her head. “Your baby’s head is HUGE!” ( insert Irish accent) and I thought, how rude are the Irish?
But it wasn’t just one person. It was several. Upon returning back to Canada I took Journey to the doctor for a simple cold. I joked with my doctor about the Irish and their comments. She joked back and said that Journey’s head had always been huge, hence the C-section. However she humoured me and measured it. Then she measured it again and then a third time. Each time her face grew more grim. She went out of the room and got her nurse and asked her to measure. Now I knew something was wrong.
“If our measurements are correct,” she said “ Journey’s head has grown six centimetres in a month. The average baby’s head should grow half a centimetre in this time.”

Within an hour we were in the hospital for an ultrasound on her head and skull. It revealed massive amounts of fluid in and around her brain, but unfortunately the ultrasound could not tell us why. So, two days later Journey and I were on a plane to Northern Ontario to have an MRI. I was scared… but nothing prepared me for the news the radiologist would give to me. After 9 hours of excruciating waiting and testing, the Radiologist called me into the X-ray room and pulled the MRI up. I have an Anatomy and Physiology degree so I knew what a brain should look like on a scan.
And all I saw was black—no brain matter.
“Where is her brain!?” I asked.
“This is the worst case of Hydrocephalus I have ever seen. Does she sit up, make eye contact, clap?” he asked.
Yes, she does all of that.” I replied.
“I find that hard to believe as this is the brain of a vegetable. Also, has she ever been dropped on her head?”
No!” (I might not have been able to answer that with such conviction with my fourth child but my first?! Never.)
“Well she has suffered a massive haemorrhage—a stroke on her left side of her brain.”
“Will she be alive at Christmas?” I asked. It was October.
“I can’t answer that. She needs to have surgery immediately.”These are words you think you will never hear.

This kind of stuff happens to other people.

When I first found out I was pregnant I didn’t want to be! I wanted to live our dream life of snowboarding and playing in Switzerland! But now I wanted her! I loved her, I needed her and now there was a chance she was going to die? A chance I would not have this precious baby in my life?

Five days later we were handing our baby over to a neurosurgeon.

We were given only 50/50 odds she would survive surgery. We were told it was likely if she did that she would be a vegetable in a wheel chair. These were not good odds.

I was angry, scared and I didn’t want to hand her over. My husband, who is so strong, gave me a tough but necessary talking to. As the doctors operated he said to me:

“Julie, we have a choice to make. We can raise her in a bubble, raise her as a  sick kid and she will be what they are saying she will be. Or we can choose to allow her to show us who she will be— let her climb to the top of a jungle gym and not worry about her falling. We can choose to empower her to be what God wants her to be. I am choosing to be that parent, but you have to make the choice too, on your own.”

As mad at it made me at the time because I was the mom. I needed to hear that, to have that reality check.

After surgery we were told she would be in the hospital for two weeks. They said she would most likely lose weight because she would not feel like eating. Thousands of people around the world prayed for my little girl and for Ben and I.

Forty-eight hours later we walked out of the hospital with Journey in our arms and she had put on a pound!

Doctors and nurses would always ask us if we named her Journey Hope after she was diagnosed. But we didn’t. To this day when doctors and nurses look at her chart they cannot believe it. She has and is beating all of the odds.

There are so many miraculous details along the way, so many words, it would fill a book.

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Today, Journey is 13 years old. She has been through 15 surgeries in 13 years. Needless to say we are old news at BC Children’s Hospital.

Every day she lives with pain and with struggles and yet she does not complain. She gets her sisters to help with small things like buttoning her shirt and putting her hair in a pony tail. The right side of her body does not work like her left. So, she modifies things. She is not a “sick” kid. She longs to be “normal” in the eyes of the world. She runs, she skis, she rides a bike. Yes, It took longer than most and it looks different but she does it. Just this past week she hiked to Joffre lake—a 5 hour hike up the mountains just outside Pemberton. She stumbled, she fell in mud waste deep, her right leg kept giving out and yet she kept going. With laughter and a smile on her face she kept going and she made it.

Her compassion for others and her wisdom astounds me. She teaches me everyday that there is always something to smile or laugh about despite pain.

We do not know what the future holds. But we choose to hope. We choose not to live in fear. Every day that Journey is well and not having a shunt malfunction, we celebrate. We celebrate her life, we celebrate her ” normality” and we celebrate her spirit. We are thankful for these days and we choose not to look to what the future could hold. I am often asked how I don’t live each day worrying that she will malfunction. To be honest, I don’t think about it. She doesn’t worry about it, so why should I?

Last year was a terrible year, medically speaking for her. She had five shunt surgeries (see below) in a year.

Each surgery requires:

  • shaving the back of her head,
  • 30 stitches in her scalp,
  • 19 stitches in her tummy.

It also meant 40 visits all together to the hospital. But she kept smiling. She’d be in the recovery room cracking jokes and asking to go back to school. She does not dwell on the bad but rather looks forward with hope to the future. One day at a time. That is how we live.

During Journey’s first surgery the doctors inserted a shunt into her brain which would help regulate the cerebral spinal fluid. Our bodies do it naturally for us, but for her it gets blocked. This shunt is a tube that goes into her brain, attaches to a tube plastic valve, which is attached to another tube that runs down her clavicle, into her abdomen. That’s right—a few small pieces of plastic keep my daughter alive.
It is a miracle really. However—it’s not supposed to be there. It is a man made device which can malfunction at any time. When she was first shunted the doctors told us to expect a malfunction within the first two years. We were given a list of all the symptoms she may have if she in malfunction. Fortunately, we did not know what a shunt malfunction looked like until she was 7 years old.
A shunt malfunction is a violent headache where she screams in pain. No amount of Tylenol or morphine can touch it. When the pain gets to be too much (and this kid has a pain tolerance through the roof), she begins to vomit over and over until she can’t vomit anymore. Meanwhile, she’s still screaming in pain. After this comes delirium. The pain will get so bad, that if she is not operated on, she gets delirious. Sometimes this lasts for over 24 hours until the doctors deem it time to operate. Sometimes we know immediately. Now that she is old enough, she tells me when she has a shunt headache. She knows a shunt headache from a normal everyday headache. Really, anything can happen at any time: Tubes get old, tubes get blocked and valves get clogged. The only relief from these headaches is going in and making sure everything is working, and if not, we have to fix it. That requires multiple stitches in her head and abdomen, which comes with risk of infection…not to mention the psychological toll it takes on her every time she is faced with her mortality as she goes under the knife.
But we do not think about shunt malfunction on a daily basis. I don’t sit at home wondering if I will get a call from her teacher saying she is not doing well. Call it denial, call it coping, but I just can’t go there. Because if I did, if I dwelled on it, I would be a wreck everyday. I would be thinking about losing her. So we don’t think on these things. We simply take it one day at a time.
As her mother, there are days that I am sad, that I allow myself to cry for her. Usually, it’s in the dark of night when we are in hospital, and I’m laying next to her in a cot. I wish she did not have to explain to people why she has “a baby hand.” My heart aches for her. But I do not let myself stay in that place long… I wipe my tears, I pull up my socks and I know that the daylight bring fresh hope.

And I know that Journey and our whole family, will be okay.

9 Comments

  • Reply Dana May 25, 2014 at 4:31 PM

    I found your post by simply searching “hydrocephalus” into Pinterest’s search bar. I enjoyed reading about your story, as it is all too familiar to me. My now 3 year old, was born a preemie and suffered two brain hemorrhages caused by his prematurity. He has had 3 surgeries so far – the last was when he was 6 months old (knock on wood). While I know how painful a journey this is, your attitude is admirable. I will keep your daughter and your family in my thoughts and prayers as we all travel through the world of hydrocephalus.

    • Reply Michaela Evanow May 26, 2014 at 4:53 PM

      Thanks for visiting from Pinterest Dana, and taking time to comment! This post was written by Julie, and she is indeed, an amazing women with a beautiful outlook on life.

  • Reply Sarah Null November 9, 2013 at 6:39 PM

    Thank you for your story. It a testimony of rawness, openness, grace, reassurance and support. Sometimes we feel lonely in the Hydro world. My son is 9 months old and was shunted when he was 3 months. Thankfully (and prayfully) he has only had one surgery and minor complications. I love that I’ve found someone that walks thru life as a Hydro Mom too!

  • Reply kim barreca November 1, 2013 at 4:25 PM

    Journey Hope is beautiful and so are you! What a wonderful testimony of love, grace, mercy and trusting in the Lord you set before everyone who reads this. I pray that your life will truly be continually blessed. God bless you! Kim

  • Reply Lauren October 21, 2013 at 5:50 PM

    Now that I can see through my tears to comment, Journey’s story is my daughter, Malayna’s, story and you’ve told it in words I could never get down in writing. I happened to land on your blog while browsing Pinterest, it doesn’t look like the norm for hydrocephalus pins, so I believe God led me here to reassure us that we are not alone and to find some comfort in the fact that there are other beautiful little girls and strong, super mommas out there overcoming the challenges of this condition. Thank you so much for sharing!! God bless you and Journey! Look forward to reading more of your updates!

    • Reply Michaela. October 21, 2013 at 7:39 PM

      Lauren, that’s so amazing to hear! Thank you for sharing! What a miracle your girls are! 🙂

  • Reply Anita kurney October 12, 2013 at 11:21 PM

    We will never come close to the description of beauty that humanity holds in high esteem. Be still and listen to Our Lords beauty…. So quiet this ‘Momma beauty’ , umbilical cords replaced now by glistening ribbons and sparkling bows….dressing the ultimate beauty of our baby girls like Journey and Florence and Chloe and Calle and so many others whispering all around us all. It’s in the quiet. Don’t ask, it is there. Listen. <3

  • Reply Brie October 10, 2013 at 9:54 PM

    Wow, what an incredibly beautiful girl, inside and out, with a beautiful name too! This is really neat, how you’re helping to share these stories about brave Mamas and their babies. My heart aches for their suffering, but I know they will be richly rewarded.

    • Reply Michaela. October 11, 2013 at 9:10 AM

      Isn’t she lovely, Brie? Thanks for commenting. And yes, it’s such a joy for me to share these stories. I love it so!

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