Saturday, May 17, 2014

Scary Words Like 'MRI' & 'Pediatric Neurosurgeon'

I've been a bit stressed out lately & prone to being a bit more flaky than usual, unfortunately. I apologize if I forgot something that I promised to do for you. I've also been debating a little about whether or not to blog about it, but I think I need to get it off my chest.

So glad to have her back in my arms again.
A couple weeks ago, Brontë went to Children's Hospital for an MRI of her spine. The machine that does magnetic resonance imaging is a huge room-sized thing that the patient goes inside of. It's very noisy & would likely scare the crap out of a seven-month-old, so to keep her still, an Anaesthesiologist put Brontë under a light general anaesthetic. I know the doctors & nurses & technicians at Children's hospital are some of the best in the country & they are very experienced at dealing with wee ones like my girl. But it was still nerve wracking to put a seven-month-old in a little gown & give her to a nurse, then sit in the waiting room without her for an hour & a half.

Everything went well & Brontë came out of the anaesthesia quickly without any noticeable side effects. We were home & she was crawling around on the floor, whacking things & babbling loudly within an hour of waking up. The only way you'd know she was in the hospital at all are three tiny pinpricks on her hands & the remnants of adhesive stuck to her where the electrodes & IV were attached.

You're probably wondering why she needed an MRI. When Brontë was born, there were a few odd things about her bum that concerned our Midwife. A Pediatrician was called in to see her & urged us to stay overnight at Women's Hospital so we could see the Pediatric Surgeon the next day. He was very reassuring & told us that one of the odd skin tag type things would likely just 'resolve' on its own within a week or two, then that we should call him & make a follow-up appointment in about a month.

We saw him a month later & he ordered an ultrasound of Brontë's lower back, which was done at the same time as the check on her hips. I was born with hip dysplasia, so they wanted to check her carefully for it too. As the Radiologist was looking at her spinal cord, he explained that hers was a bit unusual. I started to get quite anxious when he suggested that we do an X-ray immediately to get more information about what was going on with her spinal cord & the last few vertebrae.

I couldn't hold back tears as I watched the nurses gently but firmly strap down my struggling six-week-old for her X-ray. All kinds of things were going through my mind after hearing that her spinal cord & nerves were abnormal. The nurses got the X-ray quickly & I was able to quickly calm Brontë down breastfeeding in the waiting room. As soon as we headed home, I called my sister. It's always good to have a doctor in the family, but I was never so grateful as to have a neurologist for a sister as that day in October.

My sis calmed me down & explained that it might be a tethered cord, but that wasn't life threatening. We went in to see the Pediatric Surgeon not long after the ultrasound & X-ray & he confirmed that we were dealing with a tethered spinal cord. Our next step was to get an MRI & be referred to a Neurosurgeon. Then we waited... & waited... & waited to hear back from the hospital with a date for the MRI & consultation with the neurosurgeon. Before you get up in arms about wait times, we waited because it's safer to do the MRI later, because of the general anaesthetic. If she needs to have surgery, they would want her to be a bit older for that. However, they wouldn't want to do the MRI too long before the surgery, since she's growing & changing so much at this age & they need the images to be current.

I was relieved to have the first big hurdle past, but there were still a lot of questions swirling around in my head. Last Thursday, we met with the Pediatric Neurosurgeon to go over the results of the MRI. My sister came with Oliver, Brontë & I to the appointment. First, another doctor (a Neurosurgery Fellow, I think) examined Brontë & talked to us, getting a sense of how much we understand about her condition. Then the Neurosurgeon came in & explained what he saw in the MRI, as well as assessing reflexes & muscle tone.

The doctor explained that when Brontë was just a little embryo, probably around eight weeks gestation, some fat cells got trapped in the spinal cavity as it was closing up. Those fat cells have grown into a lipoma, which is attaching her spinal cord at the end of it. He told us that a tethered cord is essentially on a spectrum along with spina bifida, which (as you likely know) is much more serious. Her brain, skull & vertebrae are all normal, but there was another thing the MRI showed. She has syrinx (fluid) in the lower thoracic area of her spinal cord. It's not certain whether this is due to the tethered cord or just associated with it.

I was hoping for a reassuring, black & white answer with regards to whether or not Brontë will need surgery to correct her spine. The doctor did say he recommended surgery to correct it, because although she shows no major effects of the tethering now, it's likely she would have problems in future. As she grows, the fact that her spinal cord is tied down at the bottom--rather than free floating like a normal one--would cause traction on the nerves in the lower part of the spine. Eventually, the nerves would get damaged & this could cause urinary & bowel incontinence, among other things.

After the appointment, we went downstairs to grab a coffee & I burst into tears. Partly it was catharsis; waiting for this appointment has been a subtle but ongoing stress for a long time now. Part of it was the fact that this Neurosurgeon is referring us to another one in the Spinal Clinic & recommending that Brontë undergo further testing, which will involve sedation again. Just hearing a detailed explanation from a Pediatric Neurosurgeon about how exactly they would do spinal surgery on my infant daughter, was probably enough reason to cry.

My smiley girl.
My sister gave me a hug & told me it's going to be okay. I feel incredibly lucky, not just to have a sister who will take time out of the middle of her work day to hold her niece so we could concentrate on what the Neurosurgeon was telling us, but that she's a Neurologist who can understand the MRI we looked at & is familiar with this condition. While I was wiping away the tears, she wrote up a summary of the doctor's findings, including explanations of some of the terminology we're now dealing with (syrinx, lipoma, category spinal dysraphism, urodynamics) into my phone.

I am still holding a little knot of stress in my belly that probably won't go away until after Brontë's had surgery, if the other Neurosurgeon agrees it's necessary after the urodynamics studies. However, counter to that, I feel an overwhelming sense of gratitude, & not just because of my wonderful doctor sister. I'm grateful that I live in a country with socialized medicine & we don't have to worry about how we'll afford this. I feel lucky that Brontë was born in the 21st century, when we have the knowledge & technology to diagnose & treat this condition before she even has any negative effects of her tethered cord. I feel fortunate that we live close to BC Children's Hospital & don't have to travel across the province to access the specialists that we need to see. I also feel hopeful because of what I see in my daughter: she's a strong little person already & I know she will come through this with a smile.

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  1. This comment has been removed by the author.

  2. Oh Lisa - I feel for you! It's awful having to take your child to the hospital and waiting to hear what could 'potentially' be going on in their bodies. You seem to be handling it incredibly well and little Bronte looks like she is a happy little girl enjoying life. Hugs to you! And thank you for sharing :) She'll be in my thoughts and prayers!

    PS - I was signed into my husbands account when I first posted this haha.

  3. Oh my. That IS scary....I would have been the same......any sort of 'procedures' done on a baby seem to hurt us more eh? Hang in there. I remember them testing Tara's hips and back for AGES..brought in 'experts' after she was born but was mainly due to her being breach..but so thankful that they are 'experts' really. Poor little Bronte.....

    1. Yup, breech babies are at higher risk of hip dysplasia. They take it much more seriously than they did a generation or two ago, thankfully.

  4. Lisa you are in such good hands at Children's hospital. They saved my son's life when he was born premature and the doctors are phenomenal. I know it is very scary but you and Bronte are in the best hands possible!

    1. Yes, every experience we've had there has been positive. Thanks for the reassurance!

  5. I feel for you Lisa. It's so hard to be strong and show a smiling face for your little one while you worry inside. You have a strong daughter and a strong team, I'm sure everything will be fine at the end. Hang in there. Hugs


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