A year ago I thought I knew who I was. I was happy and had a plan and knew where we were going. Then BAM!
Spina Bifida. And our world tilted a bit. Not that much, just a bit. We are still heading forward and things haven’t changed that much. But a year ago I didn’t know that. No one knew that. All we knew was that our world had changed forever and we were trying to catch our bearings and see what we were looking at.
I keep a journal so it is very easy for me to read back and see what I felt in those days leading up to the diagnosis, but the moment the doctor took me into his office and told me that our child had spina bifida – that is ingrained in my memory and I don’t need to look it up. Maybe reliving it, telling the story from the beginning will help me to let go. I think the one year anniversary is important, the second year not so much. So here goes…
July 16, 2009. This was the day I went for a second level ultrasound, 21 weeks pregnant and knowing that my baby was a boy and 2 weeks ago they couldn’t see his cerebellum (the important part of the brain – well it’s all important – but the part that controls breathing ect). But all my tests had come back ok so I tried not to worry, I even told Kyle to stay home. So I was in ultrasound for 2 hours as they twisted and turned me, had different people come in and then went outside and talked in whispers as I lay in the dark with my baby and my thoughts. Finally they told me I could wait and talk to the doctor, and gave me some pictures.
I didn’t have to wait very long. I had my new blackberry and was sending messages to Kyle. But really what could I say. That I was waiting, and that I was very, very scared. The doctor called me in, this was someone that I had never met before but was seeing me as a favour to my regular OB.
The conversation – that I remember – went something like. “The ultrasound shows that the baby has spina bifida. You are 21 weeks along; if you want to terminate you have until 24 weeks. We will support whatever decision you want to do and if you want to terminate we can take care of that here instead of your own hospital if you want. OK I’ll leave you alone now and give you some time. There is a phone you can call someone and I’ll be back.”
I am not sure if there was more, it doesn’t really matter because that is how I remember it. This is what your baby has, you can terminate, and I’ll be back. I tried calling Kyle, thinking oh my God, what do I say?! I sent him messages but he wasn’t there. So I called work and talked to one of the girls there. Deep breath, ‘the baby has spina bifida and we don’t know what we are going to do’. I finally did get a hold of Kyle and he asked the question I was wondering. What does this mean and What are we going to do?
The doctor and I did discuss what spina bifida was, but I can’t really remember what he said. I remember quite clearly what he said two weeks later and that was that spina bifida meant paraplegia, total dependence, mental difficulties, diapers and just a hard life. And not just an effect on the baby and me, but Kyle, our relationship and on Katheryn. He wanted me to reconsider our decision – but I get ahead of the story. I left with an appointment to come back downtown the next day to meet genetics.
Then I had to fight my way back home during rush hour. Sitting in the middle of the subway (someone was nice and gave me a seat) thinking about what I was told, not being able to look into the future, not wanting to feel kicking and punching in my belly. Could I see anything, feel anything, do anything? No, I was stopped. Staring out the window at nothing with tears streaming down my face, alone in the subway car full of people.
I got stuck in traffic on the way home – yay for rush hour – it must have taken me over 2 hours to get home, but it felt that days. I called my parents at the cottage and my sister from the car. They all knew I had gone for an ultrasound and were waiting to hear that everything had gone well. But then I called and couldn’t talk, needing to take a deep breath and just get the words out. “The baby has spina bifida.” No more Nickolas, just baby. And give out the small amount of information that I knew. The people on the other side of the phone crying. Their world had stopped that day as well.
Kyle, Katheryn and I went out to a family birthday dinner, tried to act normal, not wanting to disrupt the happy occaision. I don't think that we succeeded that well. I know I was numb, just letting everything pass me by, a little blurry, a little grey.
Needless to say, Kyle and I didn’t sleep very well. In fact I think I got up that night and did some internet surfing. What is the first thing that pops up when you type spina bifida? Wikipedia – the horrible, scary site. I didn’t want clinical explanations of what caused it, or why. I wanted to know what to expect and what my child would look like! I finally found a site
http://www.spinabifidaconnection.com/ that told me just what I wanted to know. I could actually see real-life children with this, and read postings from their parents.
The next day Kyle and I visited genetics and got some solid information. We talked about a neural tube defect, physical function, hydrocephalus and probably more. We wanted to know definite information. Will he walk, will he play sports, will he go to school? Will we need to find a new house? Do I have to quit my job to stay home? What about Katheryn. But we couldn’t get that information – they couldn’t even say where it was! Just an estimate, and some possibilities. We left that appointment with more information, more appointments and a bit more understanding.
The next couple days are a blur. Doctors, tests, questions and more questions. Going back and forth, what will we do? What are we looking at? I spent my 31st birthday at Sick Kids hospital and Bloorview Rehab hospital talking to doctors and getting tests done. And still thinking, thinking, thinking. I had it down, explaining spina bifida to family and what we were going to do. Everyone was very, very supportive. They were with us no matter what we decided, and not pushing either choice (to continue or to terminate). I am so profoundly thankful for this; I think I might have broken if there was any pressure.
For 9 days we saw doctors, getting tests (MRI, amnio) and reading; reading blogs, internet sites, and information packages, everything I could get a hold of. We made our decision on July 25th, Kyle’s birthday. We had talked about what was going on, what we thought of the information we were told, what we thought, how it would affect Katheryn. Worried about Katheryn and how her life would change.
I remember exactly where we were in the house when we decided. We each asked the other what they wanted to do. Pretty much at the same time we said we wanted to keep him. And that was that. We had Nickolas again.
Our world started turning again, we were pregnant again, and we started our journey with spina bifida. One year ago.
The dreaded ditropan. I’ve heard of it before – it is one of the most common medications that kids who have SB are on – second only to Miralax it seems. This medication is to relax to bladder, this prevents reflux (urine being forced back into the kidneys – not good). But wait a sec! I thought Nickolas’ bladder was relaxed – the ‘lazy’ bladder. Well no we don’t know what his bladder is like. We need further study – urodynamics (which we get done in the next month or 2).
