Not a nurse...but, a concerned father Grade 3 IVH, PVL, Seizures

[concernedfather]

Hi guys,

Sorry for barging in but, I could really use some support.

Our daughter (Michelle) was born at 31 weeks. She was 4.5 lbs, had sepsis, and the doctors to this day don't know how this happened.

Since then, we got bad news everyday. First was the grade 3 IVH. to a point where her ventricles were at least 3 times larger than normal (all 4). Then came the PVL. It's about a 3/4" chunk of white matter according to the last ultrasound a few weeks ago.

We were heartbroken of course but, encouraged with the notion of doing therapy and the doctors were telling us that she still has a shot at being close to normal.

And now, she just had her first seizure. It was a full body seizure and we called 911. We actually think she had some minor seizures in the past but, this time she was twitching and convulsing for 5 mins. They did a CT scan and said that they did not have to give her any medications for epilepsy or do any other testing for now. We know this is bad and that the prognosis is not as good as a baby without seizures. She is going in for an EEG in a few days.

Also, we've just learned that some precautions/treatments could have been done (steroids, cold cap, earlier intervention.) which makes it that much harder to digest.

I am curious to see if you guys have any advice or stories to share about kids like MIchelle that came out of this ok. When I say "ok", I mean could be in a wheelchair/uses crutches but, is living a full life. We are realistic on Michelle's chances of being "Normal."

[caroladybelle, BSN, RN]

I am sorry to hear about your daughter and my thoughts are with you.

I regret that we can say to you is limited as the site does not permit medical advice to be given - it goes specifically against the rules as posted when you sign up. And as we have a very limited set of data on your situation, it would be unethically to do so.

You need to speak to the MD in charge of the case, and request a second opinion from a specialty center if you have concerns regarding your child's care. Going to an anonymous internet site is not going to get fully sound advice for the reasons listed above.

You might approach social work and request referral to a support group, also. Other parents with similar experiences may be helpful.

[concernedfather]

Thanks, you are right. Let me ask a different question. With the absence of additional details, have you guys seen kids come out of scenarios the same or worse than Michelle ok? Maybe it's the same one as my original one...

If that is not an acceptable question, are there other forums and communities (am a member of Shareyourstory.com) I should look into?

[AirforceRN, RN]

Even if advice were allowed...that is an incredibly difficult question to answer. Kids are amazing creatures and are so often able to adapt and overcome...heck, I saw a special on 20/20 about a child with a hemispherectomy that is now in school and functioning...but that kid isn't Michelle. Her story (as is every child's story) is unique and crystal ball gazing is just plain dangerous.

Hope for the very best, prepare for the very worst.

[caroladybelle, BSN, RN]

Really no, not with the details that you are providing.......and it would be inappropriate to give or take away hope based on limited data. Thus the reason for the policy of not giving advice.

Again, a parent's support group would be best.

[prmenrs, RN]

As has been stated, we cannot give any opinions or advice regarding your baby. As a moderator, I must close the thread.

Please know we wish you, your baby and your family all the best.

Respectfully,

prmenrs, moderator

[NRSKarenRN, BSN, RN]

aboutkidshealth: premature babies: intraventricular hemorrhage (ivh)

periventricular leukomalacia information page: national institute ...

national organization for rare disorders (nord)

support groups:

cp parent: http://www.cpparent.org/faq.htm

preemie links - premature baby resource websites

use these resources to guide discussions with your pediatrician.