I originally posted this on facebook soon after we were home from the hospital so I figure this is a good place to start this blog and tell our story...
Our beautiful daughter Madison Elizabeth was born Thursday Feb 10th at 6:58 pm, 8lbs 12oz. As soon as she was born we saw the open lesion low on her back and had to idea what it was. I naively thought it was just skin that would need to be closed up, but once the pediatrician arrived at the hospital he started using the words Spina Bifida and then I realised that the defect on her back was a little more serious than I had originally thought. A neurosurgeon in Saskatoon was contacted and said Madison would need to be sent by air ambulance right away. I was able to travel with her in the air ambulance Friday morning and Greg had to drive to meet us up there.
Saturday afternoon Madison had surgery on her spinal cord and her back was closed up. It was so hard to watch her go into surgery, and waiting for it to be over was especially hard. Thankfully we had my parents up there that day and they were able to provide a distraction for us. It was such a relief when the surgeon came and spoke to us and told us that everything had gone how he had planned. After this we really started processing everything that was going on...
Madison was born with a condition called myelomeningocele which is a form of spina bifida. There are lots of resources on the internet that can fully explain it for you but essentially it means she has an incomplete formation of her spine and spinal cord. It results in partial or complete paralysis and loss of sensation in the legs, and affects the functioning of the bowel and bladder. While this all sounds pretty scary, the important thing to know is that all kids with spina bifida have different levels of functionality. A lot of it depends on the site of the lesion and luckily Maddi's was quite low. Her neurosurgeon believes that her spinal cord damage begins beyond the L5 level. She quite strong in her hips and knees so that's a great sign!
One of the complications of Spina Bifida is that once the defect on her back was closed up, the cerebrospinal fluid that was leaking from the site of her lesion now has nowhere to go. We have to watch her for signs of hydrocephalus and she may need to have another surgery to have a shunt placed to deal with the buildup of fluid. We are regularily measuring her head and carefully monitoring the fontanel. There are also a number of other signs and symptoms that we are watching for. For now her body is managing to get rid of and deal with the fluid so we are remaining hopeful that this will continue. This could change quickly though and we could be heading to saskatoon for another surgery within days, weeks or months.
We also have to watch her carefully for signs of a Urinary Tract Infection. Because her condition affects the functionality of her bladder she may not be able to fully empty it. When we left the hospital her bladder was emptying well, but this could change over the next few months and eventually we may need to learn how to catheterize her to empty her bladder for her.
Maddi had an MRI before she was discharged which showed that she also has a Chiari II Malformation. This goes hand in hand with Spina bifida. It basically means that the brain stem is lower than usual and compresses the upper part of the spinal cord in the neck. Again, there are several resources out there that can explain this in more detail for you. While there is a long list of symptoms that go along with this, Maddi has so far escaped most of them, but this could change as she grows.
This is a very quick explanation of what is going on with Maddi but the reality is that we don't know how all this will affect her in the future. This is really the hardest part for Greg and I. While we are trying our best to enjoy Maddi and get to know her as she is right now, we can't help but think about the future. We have to keep reminding ourselves to take this all one day at a time. This is definitely not what we had planned when thinking about having our first baby but Madison is a wonderful gift that has come into our lives and we are so glad she is ours:) We will do our best to give her everything she needs to grow and develop to her fullest potential but ultimately, she will write her story. She is so fiesty, strong and stubborn which is great to see because we know that she won't let anything stand in the way of what she wants to do or where she wants to go!!
I should also mention that there is a place in Saskatoon called the Kinsmen children's centre in Saskatoon which is an awesome place that will coordinate all of the care for Maddi until she is 18. We will see all of maddi's doctors and therapists in this once place and it is all coordinated for us! we will also be able to meet other families and spina bifida kids through the center. We are so grateful that a place like this exists as we could not imagine where we would have even started to get all of the care she will need organised.
It's been an interesting ride we've been on since Maddi arrived, filled with emotional highs and lows. We've had a lot of information to take in and learn in such a short period and most of the time it's extremely overwhelming. I feel like we've had to become experts on Spina Bifida but we still have a lot to learn. Please feel free to ask us questions if there is anything you are curious about in regards to Maddi, or spina bifida in general. We are going to be Maddi's advocates and educating our friends and family who are not familiar with this condition will be something we need to do! We might not have all the answers but we are definitely willing to help everyone understand as best as we can.
Thanks to you all for keeping Madison in your thoughts and prayers, I know that she was feeling all the positive energy being sent her way :) Greg and I sure felt it too and it really helped us to know we had (and still have) so many people supporting us through this. We can't wait for you all to meet her!
Meaghan and Greg
P.S. We would love to connect with a local family who has a kid with Spina Bifida. If any of you know of anyone, please let us know!
No comments:
Post a Comment