Miracle

I have sat in a room with my doctor and been told that continuing the life of my child would be detrimental to our family, to his life and to consider the hardships continuing with a pregnancy would bring to my daughter.

 This is a doctor that I know well and respect. And he believed everything that he said to me. There was no malice, he was not trying to harm me or my family. He believed that there was no value in life with spina bifida. That this was compassion and offering truth.

I still respect this doctor. And when he sees my son, and hears our stories and sees the videos, he talks about miracles. But my son is not a miracle. Nothing magical happened that made his life with spina bifida worth living. He is not a medical miracle who beat the odds. But in all honesty, with 60-80% of pregnancy diagnosed with spina bifida being terminated, regardless of gestation, in this day and age, in Ontario, in Canada. He did beat the odds.

We beat the odds. To bring love and laughter into our lives. Many things that are expected with spina bifida have happened.

But what my doctors see is the person, the boy, and not the spina bifida. And calls it a miracle

Yes we have spina bifida in our life, but it does not define us. 

Life with my son is so much more than spina bifida, more than hydrocephalus. Life is more than a string of diagnosis’s or a series of hospitalizations.

Life is the big baby belly laugh at 3 months old. The mischievous grin at 3 years old, and the full-on peal of joyeous laughter at 8. Life is about struggling in school, feeling different and falling down. Life is about getting back up, taking one step at a tie and moving forward.

The last 6 months have held our hardest and scariest and most out of control spina bifida (but really hydrocephalus) moments. All of which are not unexpected by themselves.

A shunt malfunction. It feels like we train for this every day. Only it had been 7 years. But we identified it, sought help, had a plan, knew what to expect. No unexpected, it was alsmost like we were newbies in the hospital.

Then a malfunction, a risk after a surgery Plans, contacts, identify and learn about wound infections, treatments, more infections, EVDs (external draining device… so an external shunt), picc lines and more treatment, surgeries and scars. It looks scary on paper. All of these things! These diagnosis’s, these conversations, waiting rooms, recovery, hospital stays and bravery beads. But you take each step back with another step forward. Looking forwards, even if you need to cry and scream in the shower.

Then it all happens again. Step back, fall back, lose control. You can’t fall apart because you need to help hold him together. Everyone asks how you di it. How strong you are, how brave. But you don’t feel strong, you don’t feel brave. You just feel yourself. A bit shattered, a bit scared and angry and jealous. Jealous of all of those other parents who don’t have to worry all the time, who don’t know what it is like to have a diagnosis

But step by step, plan by plan you move get home. You get your boy back, life back and it seems like a nightmare.

Nick says he doesn’t feel brave or strong. But it isn’t about strength and not being afraid. Life with spina bifida and hydrocephalus is not being pushed down, not giving up and not allowing fear to rule, to stop you. Even after 83 days in hospitalizations, 10 surgeries, 13 scars, 3 EVDs, 2 piccs, 4 shunts, and many, many bravery beads (3+ strings)

After all of this, and as life normalizes again you realize that all you need are smiles and laughter. You treasure every day and you love stronger, appreciate longer and just live your life.

That is our miracle.

Spina Bifida and Hydrocephalus Awareness: Week 4

It is the final week of awareness. I'll admit there were some days that I couldn't think I'd come up with 30 different things to talk about. But after a while it just flowed.

Spina Bifida and Hydrocephalus Awareness: Day 24

Social relationships are also important within our big family of spina bifida moms.
Just as it is important to have someone to talk to and be just a regular mom, it is also important to be able to talk to someone who just gets it.

There are a number of outlets for this. I was lucky that there was a parent-baby group for the first couple of years when Nick was younger (until they cancelled it) to actually get together in real-life. Social media has replaced a lot of that personal interaction, but it still has a group of people who just get it.

Baby Center has a group Spina Bifida Kids, there are a bunch of facebook groups (including Living with Spina Bifida and Take That! Spina Bifida) and of course my own group Our Lives, with spina bifida for family, parents, children and adults with spina bifida who live in Ontario. And I can’t forget all of the blogs that are out there (including my own).

During the first couple of years after D-Day I scoured these blogs and groups and tried to find what life would hold for us. Until we just started living our own. Now I use these groups because somewhere out there someone has the same thought as me, or are thinking of the same surgery, have the same concern, or just want to vent. It is for those questions that you want to make sure you have all the information before you get the doctors opinion. As well it gives me the opportunity to give my own experiences to others.

Spina Bifida and Hydrocephalus Awareness: Day 25

I talked about Hydrocephalus and a shunt waaay back at the beginning of the month. But what is a Shunt?

If hydrocephalus is too much cerebral spinal fluid in the brain, then is there a way to take that fluid and put it in part of the body that can absorb it?

The VP shunt has been used to treat hydrocephalus since 1949, and the valve in the shunt was designed by a father (John Holter) of a child with spina bifida and hydrocephalus who just needed to DO SOMETHING, and thought that he could. And he did, creating the Spitz-Holter valve, a design that is still used today. This father continued to manufacture the shunts by hand, supplying over 500 a year.

 

 The shunt is 2 catheters and a valve. One catheter is inserted into the brain (into the ventricles) to take the fluid out, then through the valve (that is located against the outside of the skull) and takes the fluid through the other catheter, down the body, (under the skin) into the peritoneal space in the belly.

There are times the shunt stops working (called a shunt malfunction) for various reasons. This is an emergency as the fluid that is normally being drained is now building up in the brain. If this happens then it needs a shunt revision.

Symptoms that we are always on the lookout for a shunt malfunction includes

·         Headaches
·         Vomiting
·         Excessive sleepiness, can’t wake up or stay awake
·         Irritability
·         Vision problems
·         Changes in eyes, including crossed eyes, uncontrolled eye movements, sunsetting of eyes
·         Seizures
·         Personality changes

The shunt is not a cure for hydrocephalus, just an ongoing treatment.

 

Spina Bifida and Hydrocephalus Awareness: Day 26

Today is Nick’s last day of school. So I’ll talk about learning and that spina bifida and hydrocephalus are associated with learning disabilities.

 

Just because there is an association doesn’t mean it will happen, but being aware of different ways that our kids might learn can help to make sure that Nick succeeds. Anticipating.

I have a whole book all about this (thanks to SB&H). So there is a whole range of different things and areas that Nick may or may not need help with over the next years.

Information processing is the area that kids with spina bifida and/or hydrocephalus may have problems with. Numbers and symbols, visual-spatial processing, making connections and organizational skills are all identified as areas that may be difficult. Kids with spina bifida seem to have a cluster of strengths and weaknesses identified as ‘non-verbal learning disorder’ (NLD).

 

Knowing that these are areas that may cause some frustration and trying to problem solve how to help Nick learn. And more importantly identifying strengths and working on these.

 

We are just at the very, very beginning of our school-learning adventure and I’ll probably know a lot more over the next years.

 

 Spina Bifida and Hydrocephalus Awareness: Day 27

We had Nick’s neurosurgeon appointment this week. To review our yearly brain and spine MRI and to look for or rule out tethered cord.

Tethered cord is the next battle to watch out for. Usually is will occur around the age of 5-10. The spinal cord usually floats free in the spinal column, protected by all of the vertebrae bones in the back.

 But with spina bifida, the spinal cord is held in place by the scar tissue that is created with the original myelomeningocele repair. So as the child grows and gets taller the spinal cord is held in place (tethered) by the scar tissue. This causes it to be stretched and damaged or have limited blood supply to the cord.

There are a number of symptoms for us to watch out for. They aren’t necessarily obvious, but sneaky signs that you might not notice from day to day. These include a change or decrease in sensory, muscle weakness, pain or a change in bladder and/or bowel function.

There is surgery to untether the cord. Surgically loosening it from the scar tissue. This won’t improve any function that has been lost, but it will prevent further loss of function. But doing surgery to untether from scar tissue will actually create more scar tissue. Then that scar tissue will tether so another surgery will create more scar tissue and it is a cycle.

So it is a fine line between maintaining function and preventing surgery and scar tissue.

 

 

We got the all clear by our neurosurgeon this week. But it is still on our radar.

Spina Bifida and Hydrocephalus Awareness: Day 28

It is in one month that Nick is going to have surgery. It is bowel surgery, because while I’ve talked about a lot of the issues regarding spina bifida this month, I didn’t really touch on the bladder or bowels. The nerves to the bladder and bowels are damaged.

The bowels don’t really want to work. So we have a lot of constipation and continence issues. We have been treating this for the past 4 ½ years and tried all kinds of options. The surgery option have been reached after a lot of trial and error and consideration. It will have a profound impact on Nick’s daily life and independence.

 The surgery is called the MACE which stands for Malone antegrade colonic enema. It allows a catheter to go into the belly button, through a one-way passage (stoma) created in the appendix (which is attached to the colon) and allows enema solution to be given directly into the top of the colon. When the catheter is removed the belly button looks like a deep belly button. After it is healed, it doesn’t need anything to cover it.

This way of giving an enema (as opposed to the traditional way) is more effective in preventing constipating and improving continence as the colon will be empty and prevent accidents through the day. It also allows Nickolas to gaining independence to be able to do this himself.

 We are 1 month away, I’m nervous about what it will be like for Nick having surgery, anxious for the recovery to be started and then finished, but know that this will go a long way in Nick’s quality of life.

 

Spina Bifida and Hydrocephalus Awareness: Day 29

Latex allergy is one of those funny things with spina bifida. There is something about having spina bifida that makes people prone to having a latex allergy.

Historically they thought it was because of the early exposure to latex through surgery, but even after ensuring latex precautions immediately (I insisted on latex free from delivery) severe latex allergies develop. So we treat Nick as if he has a latex allergy.

Natural rubber latex (not the fake stuff) can cause severe anaphylactic allergic reactions at some point of exposure. The more exposure, the more likely to develop the reaction. Natural rubber latex is in a bunch of stuff, including many of the ‘all natural’ products. It in a surprisingly number of regular use items.

 

 

Our biggest worry and no-no is latex balloons and latex gloves. These are made by pouring latex into a fine coat to make the stretchy, rubbery surface. When balloons are popped or gloves are removed it releases latex into the air.

As well anything that goes into the mouth (i.e. dental products, pacifiers, nipples) or remains on the skin (i.e. bandaids) or that is obviously rubber (i.e. rubber bands) are not in the house.

Spina Bifida and Hydrocephalus Awareness: Day 30

I thought I would end my month of awareness with a PSA thanks to a fellow SB Mommy Joanna.

And that is it.
I hope over the month that I have helped to increase awareness and helped you to learn something you might not have know.
And at the end of the day, even with all of the medical stuff and concerns, this is what spina bifida looks like.

Not because he was born with spina bifida or in spite of being born with spina bifida. But because he is Nickolas, a little 4 1/2 year old boy who LOVES AND LAUGHS.

 

General Meeting - Hydrocephalus

This month was the annual General Meeting for SB&H, our Ontario organization.

This is the second year I've attended. They have presentations every year from professionals in the area. This year the area we were talking about was Hydrocephalus.

I think I'm the only person who took notes on the presentation, but it was interesting.
One of the presenters is a renowned neuropathologist, Dr. Marc Del Bigio and he discussed the brain with hydrocephalus.
The information he gave us was interesting. And I understand the importance of having specialists coming and  talking to us, but the title of the presentation would give me some insight into the way we heard the information presented.
Damage and Dysfunction in the Hydrocephalic Brain
Personally I'm extremely sensitive to not labelling. Not saying Hydrocephalic brain, but the Brain with Hydrocephalus. Doesn't really seem to be that big of a deal, but it is to me.

Anyways.
The speaker is a pathologist. Which means that he is used to working with dead people ect. Which adds valuable knowledge, but you have to remember he is talking to a room full of people who either have hydrocephalus themselves, or has a loved one who does. I swear my mouth dropped open when he talked about animal testing and autopsy findings.
I`m going to review my notes and put them into my other, learning blog.
HERE - I want to get this part out before actually adding the information (with pictures) so hopefully it will be up by the time you visit.

The second speaker was Dr Ruth Donnelly who talked about her research done with 100 kids who have hydrocephalus secondary to a number of different reasons.
How Smart Are Kids With Hydrocephalus?
Is this a reasonable question?
Is there a reasonable answer to this question?
Not only did she start by saying who did we think was smarter. But she ended the presentation saying that no matter what different tests say, they do not label our kids.
Hallelujah!
It`s very nice to hear from a medical professional. I know sometimes we feel that they just don`t understand, and that we are fighting a battle to get our kids to seen as just kids, who also have ...
I`m going to review what she talked about as well HERE

Other parts of the General Meeting we got to meet 2 puppets with spina bifida!
Teaching Awareness through Puppetry
They go to schools and talk about what it`s like (for the puppet) to have spina bifida, and give an opportunity for questions.
They start at Grade 1.

Another great part of the general meeting was the opportunity to meet other people. I sat at a table with 4 other mothers. 2 of whom I know, but the other 2 I've only met online. It was nice to sit with mothers and eat and chat. They are also 'ahead of the game' with older children.
We are hoping to all meet at a Support Meeting for Hydrocephalus in about a month - our second meeting for our newly formed group with help from SB&H.

I enjoyed the General Meeting, and will definitely mark it on my calender for next year as well.

A little speed bump...

We made it home for a whole 5 days. During that time we got into a routine, met family, went to a christmas party, and finally became a whole family. The four of us, Kyle, me, Katheryn and Nickolas.
Things were a little rough that first night feeding all the time, cathing every 4-6 hours, giving medications, trying to get him down and then trying to fall asleep to start all over again in 1 hour! Needless to say I didn't get much sleep. Every night it got a little better. But cathing him in the middle of the night is still not any fun!

Tuesday Laura and I went Nickolas' pediatrician appointment, and we found out that his head had grown 2.1 cm in 5 days! Hydrocephalus here we are! We talked to the neuro resident and sick kids, and went back in. Laura, Nick and I went through emerg and by 1am Wednesday morning we were back to our old home of 5C. The plan was for a shunt in the morning.

Spina bifida is associated with hydrocephalus (fluid accumulation in the ventricles in the brain). Most children with spina bifida do eventually need a shunt to drain the fluid. So this step was not unexpected, we had just hoped it wouldn't be needed so soon. The shunt is permanent, there is a little flexible tube that goes from the brain, down the side of his head and into his abdomen where it drains all of the fluid. You can see the bump at the side of his head, but once his hair grows it shoulnd't be noticable.

The shunt went well. It is a 45 min operation but he was in the OR for 4 hours! A little stressful for me. Finally a doctor came out and said everything went well, he was in recovery. They had put a second IV in after he was alseep and it had taken a couple of tries. Nickolas is a horrible IV start! He's gone through 7 IV's already and they NEVER get it on the first try. Usually the 3rd or so. This one took at least 3 tries! But he was asleep and they needed it. This one was in his foot and actually stayed the whole time we were there.

Recovery from the shunt was quick. He had a bandage on his head and his belly. It looks so much worse than it actually is. It doesn't seem to bother him at all. And was plan on putting hats on him for a while. Once the incision heals (its about the circumfrance of half of loonie at his hairline on his forhead.

I stayed the entire time at the hospital with Nickolas, Laura (who had taken the whole week off to be with us) lived at my house for that time and took care of Katheryn (and Kyle) so I could stay at the hospital.

We were discharged (again) yestarday. Nickolas is back to his old self. Eating ALL THE TIME - no wonder he is already 9lbs 6oz at 3 weeks! He'll eat for about an hour every 2 - 3 hours (start to start). So there is a limited timeframe to get all the other stuff done.
Katheryn has been very good with him. And she missed him, she came with Kyle to pick us up Friday and kept saying "Niii, Niii" and trying to kiss him. We will see how it goes this week, I'll have both of them, Kyle will be back to work and no family to come stay with me. We'll see when I get to post again.

Side note - this is the second time I've written this, Katheryn erased the first one so hopefully I've included everything I'd planned to post.