Update on Max

I've had a few messages from people asking for an update on Max and I realized I totally forgot to share so I thought I would just write a quick post. I'm realizing this problem is fairly common with newborns and unknowing is scary and nerve wracking it is living it so I'm hoping we can help other mommas navigate through it.

So a little summary - in the delivery room the pediatrician mentioned to Chris that he had a skin tag on his midline. We were like ok no big deal - lots of people gave skin tags right? Only in babies - when they have certain markers on the midline - skin tags, sacral dimples, hairy patches - it can be a sign of spinal issues - particularly spina bifida and or tethered spinal cords. 

So when the pediatrician visited Max in our room the day after he was born she mentioned he would need a spinal ultrasound to check things out - but based on her exam she wasn't overly concerned. Ultrasound was shut down over the weekend where they were born so we ended up having to get it about a week and a half after he was born.

Our pediatrician here in downers said the same thing as he doc at the hospital - it was precautionary and she wasn't overly concerned. So we had the ultrasound and he radiologist read it on the spot said everything was ok. Awesome such a relief. Then the pediatrician called that afternoon and said well there's no evidence of a tethered cord from the picture but there is a tiny cyst at the end of his spinal cord so he's going to need an MRI for which he will need to be sedated and we need to see a neurosurgeon to have the test and be worked up for spina bifida. This was the first time we had heard the words spina bifida and honestly it terrified me. I immediately started crying and laid into the doctor for never mentioning it before and for mentioning it for the first time over the phone without much explanation. After doing research on my own I realized there is a mild form of spina bifida called spina bifida occulta that many people have and they never know about as it never causes any issues so that out my mind at ease - a little - but of course no one wants anything to be wrong with their kiddos ever.

So we had an appointment with a pediatric neurosurgeon out of Lurie's children's hospital. She confirmed Max does indeed have spina bifida occulta. She also confirmed that he would need the MRI to further confirm if any spinal cord tethering exists - ultrasound pictures are just not good enough. Because he has to be sedated for the procedure we have to wait until he is 3-4 months so we will be having the procedure downtown at Lurie's in early June. I'm terrified of my little man having to be sedated so young but I know he will be in the best hands possible at Lurie's. 

So what does it mean if his spinal cord is tethered and what does the spina bifida occulta diagnosis mean? If the MRI shows no cord tethering we are done - no more follow ups necessary and even though he does have spina bifida occulta there should be no further concerns.

If the MRI shows signs that his cord is tethered then we will be sent to the spina bifida clinic and Max will be worked up by Dr. Bowman's teamnof specialists - urologists, physical therapists, nephrologists - all who will assess he severity of his issues as a team. At that time they would all meet with us to determine a course of action which would likely include spinal cord surgery to release the tether. 

This is all very scary to us and the idea of having to wait a few months is even harder but we are just having faith that no matter what he is in good hands and will be ok. So if you could please spare a few prayers and send them our way that would be great. I'll keep everyone posted when it gets closer to time.

XOXO
K

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