PVL In Preemies

This is a rough topic for me to discuss as our baby is afflicted with PVL. PVL is a brain condition often present in preemies. Periventricular Leukomalacia is the official title, yet it is often just referred to as PVL. If your child has PVL, you need to be aware of this yet you need to not become overwhelmed with worry or panic.

What is PVL?

PVL is essentially small, dead, pockets in the brain of a baby. The dead matter in the brain is is in close proximity to fluid filled areas called ventricles. The dead matter in the brain usually only occupies a very small portion of the brain relative to the size of the whole brain.

Note the White Matter in the picture. The white matter is the damaged brain(dead brain). This is a more severe case of PVL.

What are potential effects of PVL?

This is the scary part for us parents dealing with PVL. Potential side effects are unknown and are impossible to predict. Doctors and providers alike are obliged to address potential long term effects of PVL; this is often to protect themselves from malpractice suits and for other legal and policy related reasons. If I had a dollar every time a doctor told us our baby was a candidate for death I’d have a new Mercedes Benz. So your doctor will likely tell you long-term effects could include Cerebral Palsy and other learning or physical disabilities. With this said take it with a grain of salt, as you can die from a wisdom teeth removal but it is not likely nor guaranteed.

What Can I do To Mitigate The Situation:

Nothing can be done to ameliorate PVL and said symptoms. The only course of action that can be taken is to moderate the PVL and its progression or remission. As long as the PVL is not progressing and getting worse, you should be thankful. The brain(especially the growing brain) is constantly producing and forming new synapses and neurological connections; this means there may be no effect of PVL. If the PVL is small and in a certain place in your preemies brain it may never yield long-term negative effects.

How do doctors keep up with PVL:

A brain ultrasound or MRI reading will determine the seriousness of PVL(dead matter) in your childs’ brain. Usually in NICUs ultrasounds or MRIs will be conducted every few weeks.

What Course of Action Will be Taken:

Physical and developmental therapy will be implemented by doctors in the NICU. All you can do is be there for your child. Read to your child, do body massages on your child(stimulate muscle activity) and spend all the time you can with them. There are studies that show the benefits of skin-to-skin, body massages, and talking to or playing music for preemies. Any form of stimulation will improve brain growth and thus improve the chance your child accomplishes their milestones appropriately.

Don’t worry about what can not be controlled:

You can sit around all day worrying about what might be. Just remember, if your child is still alive you are blessed. Many parents do not get to leave the NICU with a baby. Feel fortunate to still have your child and focus on what you can do to help your baby have the best life possible.

Going through something similar. Have a baby with PVL. Comment below, share your story and experience. The more stories and advice the better for people going through these hard times. Thanks!

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