Newly Diagnosed PVL

Greetings:  My wife delivered our first child Austin, on Dec 22, 2007 after being on total bed rest for 8 days for premature rupture of membranes.   Steroids were given within the first 48 hours of her rupture and she was given tocolytics.  Austin was born 31weeks and 3 days and weighed 4lb 2oz.  He was initially diagnosed with a subarrachnoid hemmorhage by lumbar puncture after experiencing some high pitched crying and irritibility.  A head ultrasound later revealed a Grade 1 IVH, and we were told that this was reassuring that it wasn't a grade III or IV and that Grade 1's typically had minimal sequalae.  Austin never required intubation, but was on CPAP for the first couple of days after birth in addition to a caffeine drip for about two weeks for apnea episodes.  He was never apnic for long periods of time and required PPV on only one or two occasions resulting a return to baseline sats and breathing pattern. A routine followup head ultrasound was conducted this week to ensure that the IVH was fully resolved.  To the MD's surprise, a left sided unilateral PVL was found.  We were obviously shell shocked by this news....  We met with the Ped's Neurologist about an hour after the news.  We were asked if we had questions...  At the time, we were still in shock and didn't have the right questions to ask.  We have requested to meet with him again, and we have an appointment for this Sunday. Some of the basic questions we have for him are:  To please show us the ultrasound and to tell us what he is seeing?  What does he expect Austin's long term effects to be based off of the size and location of the PVL?  Best and worst case scenarios?  What does he believe caused this?  What types of OT/PT follow ups will we be doing in the first months of life.  All of the research that we have seen on PVL's is very unreassuring for this new diagnosis.  We are obviously quite concerned.  He is eating fine, his apnic episodes are much improved, bowel and bladder is working fine, and he's up to a whopping 6lb's!  I realize that CP usually presents between 6 -12 months.  If anyone has any additional questions that we could ask the Neurologist, it would be greatly appreciated.  Additionally, it would be great to hear from anyone that has any insight to all of this.  Very concerned and scared parents, Wade and Tavia

[MidwifeMom]

Dear Wade & Tavia,
I am the mother of an 8 month old with spastic quadriplegia CP and know first hand the fear and anxiety you are experiencing.  I am so sorry this is happening to you!  My son also had a PVL after being delivered at 30 weeks.  He initially did not have any symptoms.  They recommended a follow-up CT scan 3-6 months after his due date.  That scan showed the same PVL which was then called static encephalopathy.  The "we have to wait and see" is the worst, but it is unfortunately true.  I would keep a close eye on his tone and his meeting developmental milestones.  My son is still at a 2 month old developmental stage. If insurance covers it, you may want to have a PT evaluation intermittently.  You also want to get him involved in early interevention in your state.  I would recommend going to a major medical center and seeing someone who specializes in this area.  Where do you live?  I would ask for staitics on the long term implications of the diagnosis.  I have been told that the PT is the place to start.  We have not seen an OT yet.  We did see an infant educator which helps you explore alternative ways to play, infnat stimulation, etc.  I have been told that in the first 1 year you only see a speech therpsit if there are feeding issues.  My son did great until I stopped breastfeeding.  If you are breastfeeding, continue for as long as you can.  My son was officially diagnosed only 1 month ago, so I am by no means an expert, but do know the emotional devastation.  I would get into counseling NOW.  Don't blame yourself (you will but try not to) and try to take time and LOVE him for who he is.  I am just able to appreciate his gains (a smile, an attempt to copy my voice, a twinkle in his eye).   I found a great local support Yahoo support group which has been my saving grace and a HUGE help. Feel free to email me if you have questions.  My email is ***@****  Good luck!  Again, hang in there...  Michele

[wadetav]

Michele,

Thank you so much for your reply!  I am so very sorry for your situation.  Tavia and I are also healthcare providers.  Tavia is a L&D RN and myself an ICU RN.  Insurance is a non-issue as we are both in the Army and currently stationed in Hawaii.  We work at a huge hospital and have a lot of resources.  We have struggled with the decision to watch his every move as far as developmental milestones are concerned.  I believe it will be next to impossible to not focus on the 'what if's' and 'is he okay' or 'is he meeting his milestones', whereas we want to treat him as any other child until he proves otherwise.  Any thoughts??  The statistics that I've seen regarding long term implications of PVL are all very unreassuring.  They say that 60 - 100 % of these kiddos develop CP or other motor deficits...... Have you by chance heard anything other than that? I hate that 100% stat.... Not really possible but that's what several studies say.  How did your son initially present?  Also, how did they initially describe your son's PVL to you in terms of size?  We've received conflicting information from several MD's.  One said it was small, the other said it was medium and another said it was very atypical in that it was unilateral, appeared to be venous and larger than a typical PVL. When you say local Yahoo support, what exactly do you mean?  Also, I would have sent this via your email, but it showed up ***@****.  Our email is:  (i'll add spaces so that it hopefully doesn't do the same) k i n s h e l l a s @ m a c . c o m

Regards and Mahalo!

Wade and Tavia

[mommyofnathan]

Hi,

Hope you are keeping well.  Look at this website:
http://www.babyzone.com/drnathan/premature/pvl.asp
It might give you an idea of what to ask for.  This is early days for you and don't jump the gun just yet.  It really is better to wait and see sometimes since statistics are exactly what they are.  Averages of the worst and the best.  PErsonally I think it is a blessing to you that you know so early - very few people get that chance.  When you go to see your doctor, ask to be referred to a neurophysio.  That would be the best place to start.  OT is too early and saying CP, is way too early as well.  Don't treat your little one any different than you did before you knew and love him to bits.  They all flourish on love and affection.  It is natural to be scared but when you thing logically (not with your heart) there is nothing you can do to change it right now.  Baby steps.  Focus on what you will ask the doctor next time you see him and that's it.  When you go, write it all down.  As well as the answers.  And then, when you get home, you take it one answer at a time.  Go for counceliing as midwifemom suggested.  Especially your wife since it was already traumatic for her to be on bedrest, giving birth etc.  Those things are tough on their own.  I went for councelling and was on anti-depressants.  No one can do this alone.  Involve your friends and family and talk talk talk to as many people as you can about your fears but don't jump to conclusions.  
My prayers are with your family and I would like to know how Austin is doing??