MRI and Lipomyelomeningocele

Shortly after milo turned two months old he had an MRI done on his brain and pelvic/lumbar region. The MRI was looking at the bump on his back to see what it was connected to and how extensive it's connection was as well as looking at his brain for some key signs of spina bifida.

We had been anxiously awaiting this MRI because we were hoping it would answer all sorts of questions for us.  It was frustrating to have to wait until he was two months old to get the test done, but we wanted what was safest for milo - and the doctors assured us that it was worth it to wait.

Finally milo turned two months old and we had an MRI scheduled and then the night before got a phone call telling us the appointment was cancelled due to his recent hospitalization with RSV.  Apparently RSV hangs around in your lungs for quite sometime even after symptoms have gone away and with sedation or general anesthesia the respiratory weakness becomes quite a worry.

We had to wait an entire week before we could get the MRI done and still had to get a few of our doctors to pull a few strings for us to get the procedure done.

The morning of the MRI we were prepared for milo to go under general anesthesia for two hours and to be intubated during the test.  Much to our surprise we found out that our little man didn't even need to be intubated after all! He kept his vital signs nice and steady all on his own!

That night we were told that milo had a condition called lipomyelomeningocele - a rare form of spina bifida.  This condition typically manifests itself with a large fat mass on the back with a little dimple in the middle and a red birth mark. Exactly what milo had.

Milo's spinal cord was extra long and hung down further than the vertebrae and dura (the body parts that protect the cord). This left the cord exposed and vulnerable.  The fat mass on milo's back had tethered itself to milo's spinal cord and was pulling on the cord.  Now, the doctor said that this doesn't typically cause babies pain.  However, we really believe that milo is an exception.  He has clearly been uncomfortable and in pain for a considerable amount of his time here with us and we think it's due to this condition.  Call it parental intuition.

We met with the neurosurgeon a week later and he explained all the ins and outs of this condition.  He said that there are simple cases of spinal cord tethering and then there are difficult and complex cases.  Milo was right up there in the difficult and complex category.  This condition can weakness and tingly in the legs and even the inability to move or control the legs.  It can also take away the ability to control bladder and bowel functions.

He gave us the good news that he could operate within just a few days and the procedure was scheduled.  Again, there were concerns with milo's ability to handle surgery after dealing with RSV to recently.  Protocol says that doctors don't do surgery until 6 weeks after the end of RSV symptoms.  It had been 5 weeks since milo was discharged from the hospital.  The anesthesiologist told us that if she didn't feel comfortable with the way milo was breathing or holding any of his vitals as she started to put him under anesthesia that she would wake him up and re-schedule surgery for a few weeks later.