My little boy Gabriel was born on 13 May 2009, beautiful healthy 4.92kg baby. Day 1 was blissful, I could not take my eyes of my little boy. On day 2 one of the sisters offered to bath my little one while I took a shower. When I went to collect him she asked me to wait for the pediatrician as she had picked up an abnormality that was not there the day before, a lump was starting to grow at the bottom of his spine, just above the buttocks.
Dr. Stepien then arrived and examined Gabriel, advising me that it seemed to be Spina Bifida, however I would need to see a neurosurgeon and have scans done to confirm. She referred us to Dr. Stegman at Glynwood Hospital.
Day 4 of Gabriel's life saw him being under anesthetic for an MRI, it was the deepest sleep he had ever been in, so much so that I called a nurse to make sure he was okay. Originally we were told that the scans were all clear, no damage to the spinal cord, all was in order. What a relief! Then about an hour later, the head of the Radiology department arrived at the ward and advised me that they did not scan the correct area, my heart dropped.
They had to take Gabriel back for an MRI. I refused to let him go under anesthetic again, and was starting to worry about the fact that he had not fed since the night before. The radiologist agreed with no anesthetic but had to give my little one panado as no movements were allowed during the scan.
When the results came back it confirmed the spina bifida with the last two vertebrae not closing allowing for the spinal chord to be exposed. The lump we found was a build up of fluid around the spinal chord. Thankfully Gabriel was born a at 4.92kg, and this allowed for his body fat to cover the spinal chord as opposed to more sever cases where only the skin held the fluid and spinal chord in.
The operation to bridge his bones was scheduled for when he was around 8 weeks, giving Gabriel some time to build up strength for an op. Mine and my husband's job was to keep an eye on the lump and if it grew to contact Dr. Stegman immediately (night or day).
Four weeks after giving Gabriel a bath, I measured the lump and noticed that it had grown by 1cm. I was unable to reach Dr. Stegman, so I contacted the Glynwood emergency rooms who asked us to bring Gabriel in.
Once we arrived, we went straight through as they were expecting us. The doctor on duty examined Gabriel and contacted Dr Branco (Dr. Stegman's partner who was on call that night). As Gabriel was not in pain, they did not admit him, but I had to see Dr. Stegman first thing in the morning, which I did. The op was scheduled for the following Tuesday.
One of the worst things about being a mom to a baby is not giving your little one his bottle and hearing him cry because he is hungry, that and the stress of the upcoming op, the weight on my shoulders was unbearable.
The op was a success, the bones were bridged and a 4cm fatty tissue tumor was removed with a sliver of the fatty tissue left on the spinal chord. My relief was wow.
Dr. Stegman told my husband and I that Gabriel should be able to walk as the damage (if any) to his spinal cord was low down on the cord. He would however possibly have development problems iregular bowel and bladder movement and control and also erection problems. These later could be fixed, the first step was to get him walking.
Gabriel started walking at 15 months :) a little bit later than my other two, but walking none-the-less. Currently we are battling to potty train, he refuses and to be honest I do not know if he feels the urge to relieve himself. We will try to potty train, and at his next follow up visit with Dr. Stegman in August we will see what options are available to us and take it from there.
We take things as they come. He was admitted into hospital last year with constipation which is a one of the side effects of spina bifida, so we try to have him on a high fibre, high liquid diet, and he is so good with it, so proud of him.