I’ve mentioned both in this ANRC blog and CaringBridge that Owen has a form of brain damage that is a risk for babies born as early as he. I’ve never spent a lot of time describing it for a few reasons. 1) We needed to come to terms with it. 2) It often seems to me that scientist know more about Jupiter than the brain, so it’s not easy to explain. 3) Knowing what it is doesn’t give a ton of insight into what it means to Owen.
However, implications are slowly coming to light – especially with his eyes – and so I figured its a good time to put a name and brief description to the brain injury that Owen has and why it affects some of the medical and developmental decisions we make for him. As is the case with all medical information on this blog, remember, I’m a mom, not a doctor. I do my best to convey the information, as I understand it. I’ve included links to some sites on PVL so anyone with further desire to learn can get it from the true experts.
What is Periventricular leukomalacia (PVL)? PVL is an injury to the inner part of the brain that transmits information from one part of the brain to another.
What causes PVL? PVL is most common in premature infants. Those especially at risk are born before 32 weeks, weigh less than 1500 grams (3.3 lbs), are very ill due to infection at or near birth and require PDA surgery. Basically the smaller and sicker you are, the greater your risk for PVL. For reference – Owen was born at 24 weeks, 5 days, weighed 800 grams, had multiple infections, including one extremely bad in CMV and had PDA surgery at 8 days old.
What are the outcomes of PVL? PVL outcomes depend on the extent of the damage and specifically where the damage is. PVL can occur on one or both sides of the brain. PVL with Cysts (truly dead, not just damaged areas) is more advanced injury. The greatest risks are Cerebral Palsy and/or Developmental delays, vision and hearing disturbances, mental retardation, learning difficulties, epilepsy and behavior problems. Every child is different in terms of how well they are able to compensate for the damaged areas and early intervention through physical, occupation and speech therapies is essential in helping the child reach their maximum potential. Some children with PVL are only developmentally delayed and eventually “catch up” while others are physically and mentally impaired for life – the variation is great.
To what extent is Owen’s PVL? Owen has bi-lateral (both sides) PVL with cysts. The area of damage is relatively contained.
What are the expectations for Owen’s abilities in regards to his PVL? I’ll refer you to the Known Unknown post for the best answer to this question, but essentially his eyes are the first confirmed issue due to PVL. We also know that Owen has significant development delays – especially in gross motor and language skills, but that could just as easily be explained by the extent of trauma and illness that he faced in his first year. Owen’s development is tracked very closely by many doctors, therapists, a special education teacher from the school district and, most closely, by Kyle and me. With each day and every skill that Owen masters, I get more optimistic.
If you’re interested in learning more, below are some of the resources I found most helpful in understanding Owen’s diagnosis. The below are summaries, but I’ve also spent a lot of time reading research in medical journals. If you are a parent of a child who has PVL and would like to learn more about how to get to those articles, feel free to contact me. If you’re wondering how to cope with the new of PVL, I’ve shared our story here.