The angel of my life, our cute Baby Girl is born with a nural tubedefect on the spinal cord known as Lipomyelomeningocele, a severe type of Spina Bifida, wherein the neural tube doesn’t close completely when the baby is inside the womb, and the backbone that protects the spinal cord doesn’t close as it should normally. This results in damage to the spinal cord and nerves passing along the spine.
This defect also includes a fatty mass (lipoma) stuck to the spinal cord and protrudes outside as a swelling on the back. As a result, the spinal cord gets tethered into the fatty mass and this will pull cord downward. This is a very peculiar, rate and abnormal defect seen among new born babies across the globe. This type of spina bifida causes moderate to severe disabilities, including frequent urination and numbness in legs.
MRI scan of the spine has revealed tethered spinal cord with multiple lipomas, one protruding outside on the back and 2 at the lower end of the spinal cord deep inside, adjacent to the kidneys.
The Neuro Surgeon who has treated the baby said these lipomas will hamper the growth of the child. It will also result in urological problems where there will be frequent urination due to the pressure built up on the kidneys by the lipomas lying adjacent to the kidneys.
Tethered spinal cord also causes symptoms like:
- Back and leg pain
- Weak and numb legs
Our baby is 1 year old now and we have already noticed one of the symptoms which is frequent urination. She passes urine every 15 to 20 minutes which not common in infants, irrespective of the season.
Doctor has advised that the baby has to undergo couple of surgeries in 2 stages to correct the problem - first to detether the spinal cord and remove the lipoma that is protruding outside on the lower back. And the second stage involves removing the lipomas that are lying deep inside adjacent to the kidneys. He said these surgeries will hopefully result in the normal growth of the child and also control the frequent urination problem. However, he said there are still some chances of the problem coming back again in the future as the baby grows. And we might have to go for multiple surgeries again.
So, we are planning to get her the best treatment available in the world and we have decided to take her to USA where there are eminent doctors who have already treated few other cases similar to our daughter's case. However, this will incur very high expenses for us as treatment in USA is costly and we do not have any insurance cover over there. Also, according to a report published jointly by Texas Fetal Center, Health Science Center at University of Texas and CDC (Center for Disease Control and Prevention), it is estimated that the average lifetime medical costs of a person born with Spina Bifida is around $500,000.
So, we plan to seek the help of all the benevolent people all over the world for raising the requisite funds that would help us meet the expenses for all the treatments of our baby at various stages of her life.
We just pray that with God's blessings and with the help of everybody, we will be able to give our daughter a happy life that she deserves.
I, therefore, sincerely request all the people to bless our baby and support us in getting her the best treatment so that she can have a blissful and normal life like all other babies.
Thank You and God bless You All.