Second Thoughts

When we first decided on surgery I felt like a weight had lifted. We had a plan.

But that lasted, maybe a couple of hours.

Then all these questions started flooding in.

What does surgery mean? What will he be doing? Not specifically, but what does he mean by the shunt, is it permanent or will it be removed? Where does the shunt go? What is the recovery like and what kind of incision is there?

I posted some information on one of my parent groups and that just created more questions!

I had a couple of people respond with their experiences with a spinal cyst; decompression surgery, spinal shunt and/or tethered cord surgery  (and they were the choices given by Dr Rutka).

And none of those things I really wanted.

Decompression and Tethered Cord surgery are things that I have learned about spina bifida through the years.

• The thought of a decompression makes me feel sick. A decompression will treat the chiari malformation by removing a part of the skull. And I don't really think that is the issue. Except that most of the things that discusses a syrinx is paired with chiari malformation.
• Tethered Cord surgery is something that has always been in the back of my mind. The spinal cord is caught in scar tissue from Nick's original surgery to repair his back when he was born. As he grows bigger and taller the cord starts to get stretched and damaged. Surgery will release the spinal cord from the scar tissue. But any surgery creates more scar tissue.
• Spinal shunt is what we said we would go forward with. But what is involved in a spinal shunt? Of course I googled it. But I don't want to make decisions on google. So I emailed our nurse a bunch of questions and she made us an appointment to talk with Dr Rutka again.

After talking with some of the parents I am wondering if we should look at tethered cord surgery as well? I don't want to do anything if we don't need to. But I don't want to not do something that maybe we should do.

It is so hard to be a parent right now!

Wondering if we are making the right decision. But then I think about how this has been a concern we have had since last summer. When Nick needed to have higher braces and we talked to Dr Rutka about that. He ordered the MRI, which we got in February, results in March and here we are in May.

Nick's need for higher braces is still there. The independent steps he took in November is still missing. Even looking at the picture above. He is needing to bring his knees in to balance himself. I can see him moving better and getting stronger with his crutches, but I still feel that he is losing something.

He also has started to feel his feet again. I think part of it is that he doesn't want surgery, but part of it is that he has more feeling than a couple of weeks ago... at times. At other times (like when his feet are cold) he still doesn't feel it. Kyle and I have both been testing them. There are times he feels them, but there are also times he doesn't.

I still have questions and options. But we have another appointment with Dr Rutka at the end of the month. I am planning to be fully prepared with written questions to ask, and Kyle will be there.

We also have a surgery date. June 16th.

I spent all weekend covering my shifts at work. As well as worrying and wondering. Wanting to know information, but trying not to just google everything. And a syrinx is considered to be a rare medical disorder, secondary to something else, so it is difficult to find valuable information.

It has been over a week since we made the decision for surgery and got the date.

I have felt stressed and anxious. Up until Monday all I could think of was the surgery and the choices and what to do. I thought about it, I dreamt about it. But I've been trying to distract myself. Breathing exercises and my new mantra

I have been feeling better about it the last couple of days. One reason is  because I couldn't keep going on like that. And there isn't anything that I can do. I have to trust that we will make the right decision and trust in our neurosurgeon.

And blog. Which usually makes me feel better

I think I’m going to go there…

I think everyone in our blogging SB-mom community has been touched by the struggles of another mother. This mother who posted a poll on her blog asking strangers to weigh in on her options of what to do with her unborn child who was diagnosed with spina bifida. To participate in the MOMS study, to continue with the pregnancy and not participate, or to terminate.

I read her blog that lead up to the poll. I read how she presented the choices. I also read her post on our baby center website and the hurt and hardness that ensued. I can see how insulting it was to a mother with children with spina bifida, asking the public if their children should not have been born. I can so easily see and feel those strong and passionate emotions, I felt them too.

In fact, yesterday I wrote a whole letter addressed to this person about how she chose to present her nightmare of trying to choose the right path for her family, her unborn child and herself. I felt that she completely presented spina bifida in a negative light, without paying attention to the joyful experiences and lives of spina bifida. I read some of the responses on the BabyCenter site, I read fellow mothers on facebook and how upset they were, I read other mothers blogs and how upset they were. Like I said this is something that has profoundly impacted our blogging-internet community.

I talked to my husband and my sister about this poll. They could understand where she was coming from. How she was looking for anything, anybody who could tell her what to do. Because she was so lost. They reminded me that I had been where she is right now. And that got me thinking…

Here is the tricky part.

Then I read her other post. The post in which she explained why she posted the poll. The despair she felt in reaching out to other mothers about their choices and how she felt she was battered down when she tried to be honest. Her post actually made me delete my message and send her one on an entirely different level.

I do not condone the poll. What I can do is empathize with a woman who is so lost, so unsure that she used the internet to try to get answers. This is something that I use every day. The problem with the internet, blog postings, forums and emails is that it is so easy to offend someone. To post something that in your head you mean one thing, and when someone reads it, it means another.

She came seeking hope and support and then things went horribly wrong. I will blame the internet because I cannot believe that someone would so obviously insult us. Let me also say that I empathize (even more so) with all of the mothers who are so profoundly hurt by the entire situation. Who could not sleep and felt that they had to defend the lives of their glorious children. I can empathize because that is me as well! I read the blogs in response to the situation and marvelled at the children we have and the obstacles that have been overcome and the worry that spina bifida is seen in such a bad, negative light. In contrast to our awareness campaign to REDEFINE SPINA BIFIDA. This situation seems to spit in the face of that whole way of thinking and celebration of spina bifida in the month of October. But I do not think that this is what was meant.

Maybe it is my training as a nurse, as a person who sees individuals in the worst part of their lives, and offer comfort and empathy as well as medical care. To care for the soul and the body at the same time.

She did respond to my email, something that I am profoundly glad.

She discussed what makes her so scared about having a child with spina bifida. She told me about people she had talked about who had lived with spina bifida, in siblings, and parents. The things that they told her shocked me to my core. I think I might have had a horrible time making a decision if I was told, by people in person. A sister of someone with spina bifida who experienced depression as well as witnessed her parents go through many trials ‘She was a joy and a happy little child living with a disability. That happiness and joy has faded over the years to depression and personal grief at all her life is missing’. That horrifies me. Even worse, this sister says that she”went from getting love to not.” She also received a message from a friend whose mother had spina bifida (occulta?) and all the hurt she saw her mother go through. She was told by someone who lived with spina bifida ‘Whatever you decide you’ll hurt… but you’ll hurt more if you have to cope with the significant needs for 20-30 or more years.’

That statement horrifies me as well. But not as a parent who could be facing that. I don’t believe that I am facing what someone 30 years or more faced. What horrifies me, is that this person loved someone with spina bifida and is actually saying this.

I am not sure if I could have been strong enough to continue with a pregnancy if I had received those remarks. I am profoundly thankful that I did find the strength to continue and I am confident that I made the right choice. But it was a choice.

I did consider termination. Since you obviously know what choice we made, it is not obvious the turmoil that we went through in the 2 weeks in which Kyle and I struggled to make a decision that would impact us for the rest of our lives.

I will bring you to those weeks in July. I have discussed when we got our diagnosis, the negativity that was involved in the views of the doctor that gave us our diagnosis.
It is not very often that you face that type of decision. One in which you know that nothing will ever be the same again, and none of the choices are what you had ever even imagined that you would face. I did not want any of the choices. It was so unclear; life became unfocused, dark and despairing. I wanted information; I wanted someone to tell me what was going to happen, what I was looking for. I was looking for any kind of answer!

And it wasn’t only about me; it was about this child, Katheryn and Kyle. It was about bringing a life into the world that would only know pain, only know injustice and despair. It was needing to let go of the idea of perfection that I had in my head and redefine it forever. Or, even as unimaginable, to take the almost easier way out. Stop the life that was inside of me. Deliver a 22 week baby that I had killed. And live with that decision.
The first night, those were my choices. Pain and suffering for a child to live. Or pain and suffering, but a potential for the easy future I had dreamed about. But never knowing about the potential, always having that unknown child in my life but knowing it wasn’t because of a decision.

Having a choice, having a decision was tearing me apart. First it tore me one way, then the other way. We were told of mobility problems, brain and neurological problems, intelligence problems, learning disorders, bladder and bowel difficulties. All of these scary things that you cannot even imagine having a child and baby go through.

That was where I was. Wanting someone to tell me what to do. Give me an answer.

That is why I can empathize with this woman. That is why I can so easily imagine the horror that is going through her head, over and over and over again. We got a lot of information and obviously decided to continue with the pregnancy. Once the decision was made, together, the screen lifted, the fog went away. Light shined on us again and we could smile and be happy. Once the decision was made.

I hope that this post didn’t insult any of my wonderful mothers. My purpose in writing this was not to insult or explain or excuse any of the strong emotions that were involved. My emotions were running very high as well.

What I want to do, why I wrote this, is to provide comfort to my SB-mommies that were so hurt by this situation. I know that you will find comfort in the arms of your children tonight, those with spina bifida and those without. I only hope that this mother will find similar comfort as well.

It is a horrible, indescribably choice to be handed. Not everyone is as strong as we are. I hope you take comfort in that as well.

One Year

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.