Boeboe's Tethered Cord Story

Boeboe pottytrained easily at 3 years. From age 3 - 5, we thought Boeboe was a normal child (regarding bladder) who happened to have the odd accident every now and then. Never at night, rarely at school, and only wee accidents until age 4 and a half. Then also the odd bowel accident. Age 5 her pead said she's just naughty and undisciplined. By age 6 I realised that things were slowly getting worse, not better.

I took her to a urologist, and from there we were sent to numerous specialists. For numerous tests and scans. She had procedures under anaesthetic, she took medication after medication. She had x-rays and 3 MRI's. She saw 3 urologists, 2 pediatric neurologists, 2 phsycologists, 1 playtherapist, 2 neurosurgeons, 2 peadiatricians, 1 podiatrist, 1 speech therapyst, 1 occupational therapyst and 1 biokineticist. Most of them, she saw multiple times. We spent hours and hours in waiting rooms. It felt like we were chasing after the proverbial pot of gold. Looking for something we won't or couldn't find. A cause.

We had drs that laughed at us. Literally. In our faces. We had drs that cried with us. Drs that ridiculed us for being paranoid. Doctors that tried everything they could to try and help us. Beyond and above what was expected of them. We had nurses who were the most sympathetic people ever. We tried medications that had horrid side effects. We tried procedures that was still considered experimental therapy in our country. We spent thousands upon thousands upon thousands. We depleted our savings to find answers. We cried, we hoped, we prayed, we despaired. It was the most horrendous year in all of our lives together as a family.

Shortly after Boeboe turned 7, we found a neurosurgeon in this small country of ours, that has heard about occult tethered cord, and wanted to see us. He diagnosed her with it and scheduled detethering surgery to halt the progression of symptoms. By this time, her symptoms have gone downhill fast. She was soon approaching total incontinence day and night, bladder and bowel. As well as developing a dropfoot.

In April of 2011, Boeboe was operated. The neurosurgeon opened her up, and lo and behold, couldn't find the cord tethered! He was unable to cut the filum, since it had numerous nerves entangled arround it. Cutting them could lead to paralysis. After years of fighting, after months of rejoicing that we have a cause and a possible cure, after putting our daughter through back surgery....only to find no tethered cord to untether. We were devastated. Then, after 3 days on her back, my daughter was able to stand up for the first time. And she demanded to be taken to the toilet!! I was shocked, surprised and immediately realised something was different. Within hours it was clear. Her nappy stayed dry and she went to the toilet like a normal 7-year old girl. Despite it being awfully painful to get off the bed every time. By the next morning, I was certain that there was hope, somehow. Because after months, she was dry again at night. The neurosurgeon was equally surprised and gratified. He theorises that the cord was tethered to the dura at the exact place where he cut her open. I theorise that God was present that day in the theatre...

Boeboe had amazing recovery of function. Much more than we could ever hope for. Much more than you usually get after a detethering operation. Usually you're lucky if it stops symptoms from progressing. Any lost function that is regained, is a big bonus. We had numerous big bonusses.

Unfortunately, she still has some lost function. Mostly to the bowels, some to the bladder, and some to the feet. We deal with this on a daily basis. Some days are good and we're positive. Other days are more difficult and disheartening. But we walk the road we're given, and we walk it with pride and love as a family.

Update 2023, when she was 19:

Boeboe has improved in function tremendously during her teenage years. It started after the operation age 7, and just continued in leaps and bounds. 

Here's some links to posts about Boeboe you might find interesting. These are listed in order, but once you've clicked on a post, read it from the bottom up on that page if you want it chronologically:
Boeboe's pregnancy, birth and pottytraining
The road to Boeboe's tethered cord diagnosis
What is a tethered cord?
Leading up to the surgery and the surgery explained
Dethering Surgery!
Post surgery improvements
6 Week post-op
One year post-op