An SMA Type 1 diagnosis is devastating to say the least. The doctor comes in and tells the parents their beautiful baby, the light of their life, the life they had so much hope for is going to be cut short. It is hard enough to learn there is something, anything wrong with their precious angel but to find out something like an SMA prognosis is simply earth shattering.
THEN…These devastated parents are asked to make decisions no parent should ever have to make. They are asked how much care they want to give their child. They may even be told that there is no hope. They may not be given any options at all. They may be told to go home and simply enjoy the little time they have. Others may be told the only way they will leave the hospital is to have a tracheotomy and not even be offered other options.
That is why awareness so very important.
There are basically 3 options of care for an SMA Type 1 child:
*Palliative Care – Also called comfort care. The child is kept comfortable with the use of oxygen and pain relieving medications until the time they receive their wings.
*NIV (Non InVasive) Respiratory Care – A Bi-pap machine is used to assist the child in breathing. Several other machines are also used in conjunction with NIV: Cough Assist, pulse-ox, feeding pump among others.
*Tracheotomy – Instead of a Bi-pap mask, a ventilator helps the child breathe through a tube attached to a hole in their throat tube which provides a direct path to the airway. Most of the same machines are used as in NIV.
There are NO guarantees with any of the care levels. Each and every child is different. Parents need to be told that there are options. They need to be filled with hope, not fear. The fear will be there, it is inevitable. We have lived with that fear every single day for the last 4 years. But because of all those great moments in between, the giggles and the milestones, we think more of life than we do of death.
Judging a situation is always easier the further away you stand. Some would say that a parent choosing to do nothing doesn’t love their child or a parent choosing a trach is holding on too long. Neither could be further from the truth. The devastation that SMA forces on a family is harsh, no matter the length of life and no matter the decisions that are made.
Each family must choose what is right for THEIR family and THEIR child. There were so many times I wished someone would have told us what was right for us. We simply prayed for those direction and looked into Jadon’s eyes for answers. We firmly believe the path we have walked was intended for US and JADON.
We would never dream of judging anyone’s decision, we don’t have the right and we certainly don’t have the authority. What we want is for every family to know ALL of the choices for their newly diagnosed child. Some doctors are uneducated in the disease and give no options and no hope. Others may even know the options but decide on their own what is “right” for the family. In their mind there is no quality of life for a child who cannot move a muscle. Even medical professionals don’t have that authority.
So this is why we spread awareness, because knowledge is power. If a family has all the information and decides that palliative care is right for them, we want to stand by them and help them “Dance in the Rain” through their shorter storm.
There are too many stories of families who were never given the options but wish they had been. Sometimes, just sometimes, because SMA awareness is being spread, a family simply looking for more time with their beautiful daughter will receive a call. A call from a complete stranger, an SMA Mom, who is the answer to their prayers…be sure to check out our blog tomorrow (Saturday) for this exact story.