Yesterday, one of the VP's from Children's hospital called the wife to give us referrals to Geneticists and Orthopedic Docs. - Thanks Heather!
The neurosurgeon in LA called as well and spent a good amount of time on the phone with me explaining the situation and answering my questions - Thanks Solmaz!
I also put together my Annabelle binder with different sections for Diagnosis, Genetics, Neurology, OB/ GYN, Orthopedics, Perinatology, Insurance, Resources and last but not least, Bills (we received our first bill yesterday).
When I opened the envelope and discovered that we had received our first bill it felt like seeing the very first snowflake of the storm of the century.
So based on my discussion with the neurosurgeon and all the reading I have been doing, here is the situation as I understand it in simple terms:
Your brain and your spinal cord are encased in a thin layer of insulation - like the plastic around an electrical wire. Outside that insulation, they float in spinal fluid that is produced by the brain and which fills both your skull and your spine. After the fluid is the bone - your skull and spinal column ending in your tail bone.
Each link of your spinal column is made up of two pieces of bone fused together: The front part, facing your organs, is smooth and round. The back part is bumpy which gives you the bumps down the middle of your back. It is through openings in the bumpy back part of your spine that nerves run throughout your body to control all your muscles.
In Annie's case, the back part of her spine is either not forming properly or not forming at all beginning somewhere in her upper back and extending down from there (T4 or T5).
What this means is that some or all of the nerves of the spinal cord are not encased in bone and spinal fluid like they were designed to be.
When the nerves of the spinal cord are exposed like that, the fluids that they come in contact with can cause them to scar and be damaged.
There is basically nothing that can be done from a treatment standpoint until the baby is born. What can be done is the assembling of the team of doctors who are going to treat the baby once it is born.
Babies in this situation are born via cesarean and typically undergo surgery to close the spinal column within 48 hours of being born. On a scale of 1 to 10, with 10 being a very difficult surgery, I am told that this proceedure is about a 6. A little harder than average.
Another surgery that is very common in these cases is the placing of a tube that runs from the brain to the abdomen to drain excess spinal fluid. That surgery usually occurs in the first week after birth as well.
The big question is, how well developed is the nervous system below the site of exposure and how damaged is the spinal cord? Remember, the nerves in the spinal cord do have a protective coating - it just wasn't designed for this type of exposure.
Typically in cases like Annie's, where the exposure is so high up in the back, the child does not have any bowel or bladder control and the child usually cannot walk and is confined to a wheelchair for life.
There is usually no effect on the brain and children born with this condition function normally and go to school, college etc.
All that being said, each child is different and you just don't know what the situation really is until birth.
It is maddening to know that something is wrong but nothing can be done from a medical treatment standpoint for another 4 1/2 months.
There is a medical study called "MOMS" that is doing in-utero surgery but only half of those selected for the study get the surgery. If you do get the surgery, you are required to move to a treatment center for about 15 weeks, the surgery is risky and there is no conclusive evidence so far that the baby does any better than those who get the surgery afterwards.
So there it is.
We will continue to do research and meet with doctors and push them for every scrap of info and every possible treatment solution. We will keep you posted every step of the way.
I feel like my little daughter is all alone in the fight of her life and it is hard to just standby knowing it is happening.
What can we do? WE CAN PRAY.
Pray that Bella's spinal cord is not damaged by the exposure.
Pray that her nervous system continues to develop normally.
Pray for the doctors who are treating her.
Pray that Holly and I are guided through all the decisions that come our way.
Pray for our finances. I have heard from my friends with children that having a baby is expensive. Hmmmm, yeah . . . .
Your prayer, love and support over the next 4 1/2 months are so very much needed and so very much appreciated. Thank you for walking this road with us.
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