Max's Condition
So I've gotten a lot of questions from concerned mommas and curious friends about Max's condition. There are a lot of disorders, diseases and such that are discussed commonly but I feel like his isn't and it hit us like a ton of bricks so I wanted to write a post to share his story and what we have learned about the condition over the past nearly 8 months.
So let's start at the beginning. On February 26th, 2016 at 6:58 Max came into this world whimpering and whining - and screaming. He was breech all but about 2 days in my pregnancy with the twins and I'm 100% convinced it's because his sister is bossy and a spitfire and took up whatever space she felt like occupying and he just simply didn't have any room to move. He also was a breech extraction. Mia was born and 8 minutes later they pulled Max out by his feet and there he was - momma's baby - our youngest by a total of 8 minutes and totally born a momma's boy. From day 1 I've had a special connection with Max - as with all my kids - but something about him has always pulled extra tight at my heart strings. While the doctors worked on delivering the placentas and getting everything ready for me to head to recovery - one of the first things that the pediatrician told Chris was that max had a sacral skin tag. Ok we thought - no big deal. I have a skin tag on my upper arm near my armpit so we just assumed it was normal.
Then we found that every time a pediatrician would round on the babies or the nurse would come in - they would mention this. Then we were told he needed to have an ultrasound but because they were born on Friday night and we went home Sunday around noon - the ultrasound department was closed for the weekend so we would be released and it would need to be ordered by his pediatrician. Ok - at this point the pediatrician in the hospital didn't see overly concerned so we tried to put it behind us and enjoy our new, delicious babies.
Within a few days of coming home they had their first pediatrician appointment and she took a look at the skin tag, also noted he had a sacral dimple but still said she wan't all that concerned but if it were here baby she would move forward with the ultrasound. Of course we agreed so we scheduled it for his 2 week of life. At the ultrasound the radiologist read the report and told me before I left that everything looked ok and there was nothing to be concerned about. It was a huge relief off of our shoulders but of course he was ok and healthy right? Wrong. The doctor called later that afternoon and said they found a fluid filled cyst at the base of his spinal cord which likely meant at a minimum he had Spina Bifida Occulta and could be a sing of a tethered cord and it was her and the radiologist's recommendation that we move forward with an MRI under anesthesia.
Wait a second. You just told me - over the phone - after I thought everything was ok - that my son has Spina Bifida? I was absolutely floored. The only kind of spina bifida I knew about was the kind where kiddos spent their lives in wheelchairs and had lives that were very different than what I had always imagined for him. I actually said "whoa hold up - you need to repeat that slowly and explain that in more detail to me right now." And she backed up and kind of talked me through it and said we would kind of just have to wait for further testing. We decided to see one of the best pediatric neurosurgeons around - Dr. Robin Bowman with Lurie Children's hospital. We met with her and after she examined him and his ultrasound pictures she was in agreement that an MRI was necessary so we scheduled it for when he turned 3 months.
Fast forward to post MRI. We got the call that yes indeed based on all of the films he most definitely had spina bifida occulta and his spinal cord was tethered. So what does that mean? According to the Spina Bifida Association SBO is common; 10 to 20 percent of healthy people have it. Normally it is safe and people often find out they have it through an X-ray. Spina Occulta usually doesn’t cause nervous system problems. There are a few forms of SBO that do cause problems and Max has Fatty filum terminale—there is a fatty lump at the inside end of the spinal cord. We could clearly see this on his MRI images as well. People can still have forms of SBO with no neurological issues but the most frequent occurring condition of SBO is a tethered cord. This occurs when the spinal cord (usually at the lower end) is not attached correctly to the rest of the body. The cord gets stretched and damaged. Tethered cords can cause weakness, numbness and pain in the lower extremities as well as deformities in the legs. It also can cause bowel and bladder function problems.
Our next step was to have a full work up with pediatric urologists and orthopedic surgeons to determine if there has been any deterioration to his muscle functioning in his lower extremities or any issues with his bowel and bladder functioning. The good news is that there were no findings - meaning that there had been no damage caused by the tethered cord - yet. So we sat down with his team of doctors and neurosurgeon to discuss our options. We could wait and continue to do work-ups every 3 months and essentially wait to see if it did indeed cause any damage. To us this seemed like playing a dangerous game of russian roulette as we were told that once there was damage it was irreversible. We could do surgery and prevent further damage - but the damage that was done couldn't be reversed. So after talking it over with his surgeon we decided it was in Max's best interest to schedule surgery and here we are today.
Thank you so so much for all of your love and prayers over the last few days - it takes a village to raise a tiny human and we have the best one there is. If you have any questions or concerns about your baby I urge you to get a second or third or fourth opinion. We are hoping that because we caught this early he will lead a totally normal life with no long term medical issues. Also, if you have any questions at all please don't hesitate to contact me I'd be happy to answer anything!
XOXO
K
So let's start at the beginning. On February 26th, 2016 at 6:58 Max came into this world whimpering and whining - and screaming. He was breech all but about 2 days in my pregnancy with the twins and I'm 100% convinced it's because his sister is bossy and a spitfire and took up whatever space she felt like occupying and he just simply didn't have any room to move. He also was a breech extraction. Mia was born and 8 minutes later they pulled Max out by his feet and there he was - momma's baby - our youngest by a total of 8 minutes and totally born a momma's boy. From day 1 I've had a special connection with Max - as with all my kids - but something about him has always pulled extra tight at my heart strings. While the doctors worked on delivering the placentas and getting everything ready for me to head to recovery - one of the first things that the pediatrician told Chris was that max had a sacral skin tag. Ok we thought - no big deal. I have a skin tag on my upper arm near my armpit so we just assumed it was normal.
Then we found that every time a pediatrician would round on the babies or the nurse would come in - they would mention this. Then we were told he needed to have an ultrasound but because they were born on Friday night and we went home Sunday around noon - the ultrasound department was closed for the weekend so we would be released and it would need to be ordered by his pediatrician. Ok - at this point the pediatrician in the hospital didn't see overly concerned so we tried to put it behind us and enjoy our new, delicious babies.
Within a few days of coming home they had their first pediatrician appointment and she took a look at the skin tag, also noted he had a sacral dimple but still said she wan't all that concerned but if it were here baby she would move forward with the ultrasound. Of course we agreed so we scheduled it for his 2 week of life. At the ultrasound the radiologist read the report and told me before I left that everything looked ok and there was nothing to be concerned about. It was a huge relief off of our shoulders but of course he was ok and healthy right? Wrong. The doctor called later that afternoon and said they found a fluid filled cyst at the base of his spinal cord which likely meant at a minimum he had Spina Bifida Occulta and could be a sing of a tethered cord and it was her and the radiologist's recommendation that we move forward with an MRI under anesthesia.
Wait a second. You just told me - over the phone - after I thought everything was ok - that my son has Spina Bifida? I was absolutely floored. The only kind of spina bifida I knew about was the kind where kiddos spent their lives in wheelchairs and had lives that were very different than what I had always imagined for him. I actually said "whoa hold up - you need to repeat that slowly and explain that in more detail to me right now." And she backed up and kind of talked me through it and said we would kind of just have to wait for further testing. We decided to see one of the best pediatric neurosurgeons around - Dr. Robin Bowman with Lurie Children's hospital. We met with her and after she examined him and his ultrasound pictures she was in agreement that an MRI was necessary so we scheduled it for when he turned 3 months.
Fast forward to post MRI. We got the call that yes indeed based on all of the films he most definitely had spina bifida occulta and his spinal cord was tethered. So what does that mean? According to the Spina Bifida Association SBO is common; 10 to 20 percent of healthy people have it. Normally it is safe and people often find out they have it through an X-ray. Spina Occulta usually doesn’t cause nervous system problems. There are a few forms of SBO that do cause problems and Max has Fatty filum terminale—there is a fatty lump at the inside end of the spinal cord. We could clearly see this on his MRI images as well. People can still have forms of SBO with no neurological issues but the most frequent occurring condition of SBO is a tethered cord. This occurs when the spinal cord (usually at the lower end) is not attached correctly to the rest of the body. The cord gets stretched and damaged. Tethered cords can cause weakness, numbness and pain in the lower extremities as well as deformities in the legs. It also can cause bowel and bladder function problems.
Our next step was to have a full work up with pediatric urologists and orthopedic surgeons to determine if there has been any deterioration to his muscle functioning in his lower extremities or any issues with his bowel and bladder functioning. The good news is that there were no findings - meaning that there had been no damage caused by the tethered cord - yet. So we sat down with his team of doctors and neurosurgeon to discuss our options. We could wait and continue to do work-ups every 3 months and essentially wait to see if it did indeed cause any damage. To us this seemed like playing a dangerous game of russian roulette as we were told that once there was damage it was irreversible. We could do surgery and prevent further damage - but the damage that was done couldn't be reversed. So after talking it over with his surgeon we decided it was in Max's best interest to schedule surgery and here we are today.
Thank you so so much for all of your love and prayers over the last few days - it takes a village to raise a tiny human and we have the best one there is. If you have any questions or concerns about your baby I urge you to get a second or third or fourth opinion. We are hoping that because we caught this early he will lead a totally normal life with no long term medical issues. Also, if you have any questions at all please don't hesitate to contact me I'd be happy to answer anything!
XOXO
K
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