Pvl?

NicuGal, MSN, RN · Aug 9, 2003

Ah, PVL...had she ever had an MRI..that is the most definitive scan for MRI. Yes, PVL can cause blindness, but it depends on where the cysts are located and if they have become "swiss cheese" and are spreading. PVL is not caused by jaundice...it is caused by some insult to the brain, usually a lack of oxygen.

Here is a great website that we have used at work....

http://www.pediatrics.wisc.edu/childrenshosp/parents_of_preemies/pvl.html

I am so sorry that she passed away

Jolie, BSN · Aug 9, 2003

Is it possible that she had kernicterus? I've only seen this once, and that was one time too many. But the baby had overwhelming neuro problems, such as seizures, lethargy, poor tone, inability to suck, problems with maintaining temp, etc. I wonder if this would account for some of your patient's problems. I'm sorry for her suffering.

StacyC417 · Aug 10, 2003

We had the MRI done, and that is where the differing opinions of the neuro surgeon and the neuro radiologist came in. The surg. thought that the small cysts on the tips of her vents were just natural variations of *her* brain (although they were NOT present at her 1 week u/s), because he said that there was no damage to the tissues surrounding the tissues and the *cysts* were symmetrical in size. The radiologist disagreed, and said that in his opinion it was a case of PVL. The cysts were apparent at a 6 week u/s and visualized similarly during the MRI at 9 weeks. I don't think that Kernicterus was the problem, as it was her Direct bili level that was elevated. The Indirect bili was within normal ranges. She also had no problems with tone, temp control, or seizing...Thanks for the replies ladies. It is something that I know I wont ever have answers to, I think that I just want to hear someone tell me that she would have had severe delays, and that her quality of life would have been poor...I want an excuse for her to be a little angel now, if you know what I mean.

pengland1965 · Aug 10, 2003

Stacy- Im very sorry for your loss. I know that sometimes it helps to feel as though there is a good reason for your little angel to return to God. Sometimes, even believing that won't help.

You may never really know why this happened.

I had a child at 25 weeks. Grade II bleed which resolved. Large number of cysts throughout the brain. Then suddenly, a followup CUS read NORMAL CRAINIAL ULTRASOUND. This child already had signs of CP. We were later told the cysts collapsed as his brain grew. There was even a question of him having seisures a few weeks prior to the CUS. Maybe the two were related. I will never know. My thoughts and prayers are with you and your family. I pray you find the peace your looking for.

nicudaynurse · Aug 10, 2003

Sorry about the loss of Zoe (she sure is cute!!)

I work NICU as well as pediatric neurology so I have some insight on both ends. I am curious what the rest of Zoe's history is. PVL is most likely to effect premature infants from 24 weeks to 32 weeks, although it can occurr after 32 weeks. PVL is usually caused from a lack of oxygen. PVL may occur before birth and up to 40 weeks after birth. HUS's may show the beginning stages of PVL, but it may not show up until the child is a few years old and an MRI is excellent at showing the PVL. PVL often effects the motor strip of the brain so these babies will likely go on to have Cerebral Palsy, but in the majority of cases their intellect is spared. If PVL is extensive and cystic they are likely to have a lot more problems and vision can be affected.

I have a niece with PVL. She was a twin 'A" born at 31 weeks who was ventilated for 5 weeks. She had a lot of problems at birth. She now has Cerebral Palsy. She is able to walk with a walker and AFO's (leg braces). So far her intellect seems to be spared.

Kernicterus usually becomes evident in the first five days of life and may present as lethargy, irritability, hypotonia, high pitched cry, and poor eating. The overall risk for kernicterus is 50% if serum bilirubin levels are >30 and 10% if levels are between 20-25. It doesn't sound like your daughter had kernicterus.

Again I am sorry for your loss. I will say a prayer for you.

StacyC417 · Aug 12, 2003

Zoe was a 29 week gastro babe, 978 grams, vented for 72 hours, on nasal canula off and on from there on out, generally at 50ccs or less. Never really an A&B kid other than with the onset of sepsis (clebsiella) or with extreme anemia. Multiple feed issues (illeal atresia, oral aversion, intolerant of EVERYTHING!, etc). She showed no early signs of CP...The doctor did notice that towards the end, along with the poor eye coordination, she had a pretty constant tongue protrusion (don't know why this was noted in the neuro section?)...Just one of those things that we will never know. Even though it has been almost 6 months since her passing, I am constantly wondering why, as I think that any parent would. I know that *for me* I will definately need to have another child before I actually work in the NICU, or I think that my loss will still be too fresh regardless of how many years may pass. Thank you all for replying to this. As a mommy, it means so much to me!

Stacy

Long Term Care Columnist / Guide · Aug 12, 2003

Stacy: As a mother who's also been through neonatal loss (my second child who lived seven hours after birth), I hope you will accept my condolences on the passing of your precious Zoe. I know how bad it hurts, and I can tell you that it *will* get easier as time goes by, but please don't expect yourself to "get over it". One does not get over the loss of a child; you may get through it, and even past it, but NEVER over it. No matter how many children you may go on to have, you will always wonder what might have been; my daughter Melissa would have been 19 this past March, and I will never stop wondering what she might have looked like or who she might have turned out to be.

That's not to say, however, that you shouldn't pursue your career, or even work in the NICU; in time, your wounds will heal some and you'll be able to make peace with your loss. For me personally, I could never in a million years work with sick newborns because of what I've gone through---losing one would do me in emotionally even now, and I don't think that's going to change. My father told me once that "time, patience, and perseverance will accomplish all things". Let time be your friend, your teacher, your healer, and don't put yourself on a schedule that only allows you so many weeks, months etc. to mourn. Trying to put grief away before you're ready is like squeezing a balloon: it's bound to come out somewhere, usually when and where you least expect it. Be patient with yourself; you don't always have to be strong. And keep on with your search for happiness, because someday you will find it, I promise!

Good luck and God bless.