NO. Currently there is no cure for SMA, BUT there are care options, and they can allow these babies and children to have wonderful lives!
I will never forget being told by a nurse that was taking care of Leo while we were in the hospital, “Don’t trach your baby. Then he will just be there. He won’t be able to do anything, and he will not have a good life.” I cannot express the anger I felt when hearing that. This was our baby, and we were going to do everything we possibly could to give Leo joy, happiness and an amazing life. (All of our other nurses were great and loved Leo)
Part of SMA awareness and sharing Leo’s story is to share our message to Love Every One. Part of this is understanding that we are making the decisions that we think are best for Leo. There are other care options, and we believe every parent is doing what is best for their child. They are all horrible decisions, and there is no right or wrong. We just hope and pray that parents will be educated about the specific care options. All too often we hear stories of little ones in critical condition being told they don’t have options all while receiving improper care that is completely against protocols that were established years ago for SMA. Below are the very basic care options.
1. Non-invasive Care- this includes chest physiotherapy, cough assist and BiPAP, feeding tube
2. Invasive Care- this includes a tracheostomy with ventilator support.
3. Palliative Care-this is when the parent would choose that the above options are not right for their child. It is often termed a “comfort care” approach in which alternative treatments such as oxygen and medication are used to keep the baby comfortable. The majority will not live past 1 year.
2. Invasive Care- this includes a tracheostomy with ventilator support.
3. Palliative Care-this is when the parent would choose that the above options are not right for their child. It is often termed a “comfort care” approach in which alternative treatments such as oxygen and medication are used to keep the baby comfortable. The majority will not live past 1 year.
This does not mean that there aren’t gray areas and overlap, and it certainly doesn’t mean once one path is chosen you no longer have choices or options for another. We have had many difficult decisions to make. We are currently doing a non-invasive approach with Leo, but again, we believe that there are no wrong decisions. We pray that God will continue to guide us along his path he has chosen for us and Leo. We are doing everything in our power to give Leo the very best life. He is not just there, he is living and he loves his life!!
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