Tuesday, July 6, 2010

Reaching Out

Sometimes the ability to connect online just amazes me.

I finally felt like I really had a good grasp on the whole hydrocephalus thing. Found some good research info, hospitals that post their research articles online (which is more rare than I thought, except for the numerous sites that charge a ridiculous fee to access their medical journal info), as well as some online communities for those with children who have hydro. Heck, I'd even watched a VP shunt surgery online.

Enter new diagnosis. 7 syllables, 17 letters, an endless spectrum of maybes and wait and see.

Enter an entirely new and vast world of information to digest. And significantly fewer resources. From the stats that I've found, babies with HPE happen at a rate of roughly 1 in 100,000 live births. Approximately 3% of babies with HPE live to a full term birth, the rest either being miscarried, or passing away sometime in the second half of pregnancy.

Hey-at least we've beat those odds.

The catch is that HPE is rare enough, and apparently misdiagnosed as well, making the stats on it kind of confusing. There is no world wide comprehensive database to make the stats accurate. I read one report this week that gave an average survival of 6 months. That evening I was contacted by someone who has a 22yr old with HPE. 22!! Since then there have been others....a 5yr old, 8yr old, 9yr old, 14yr old......goodness....who knows what to expect.....

This sweet woman has directed me to a chat group for HPE, contact information for a research group, as well as contact information for a support group. The number of people out there who are familiar with HPE and are living with children with HPE may be small, but they are out there, and I have been blessed to have been contacted by a handful already. It is such a blessing to get an email from a stranger saying "I've been there, we've put together some information that will hopefully help you and your drs". From someone else who directed me to the opportunity to have our MRIs reviewed by radiologists with a Brain Research Center who have a lot of experience with HPE, who can evaluate our scans, and then give us some possible ideas of what to expect based on the development of others with similar scans.

Today I am feeling very grateful for this little group of parents from around the world that have come together to support each other through this journey. Though I wouldn't necessarily have ever chosen this path, I am glad that there are others who have walked and are walking it and that they are very welcoming and willing to guide and share and sympathize.

It is very overwhelming right now to be learning about an entirely new condition, and the added possibility of further complications from missing brain structures. There is so much to learn, so many specialists we'll need, and an infinite number of unknowns.

And yet somehow- despite my insane amount of fear and self doubt- the fact that I have my best friend by my side, a group of strangers willing to reach out, an amazing support network of friends and family, and the opportunity to drop to my knees to beg the heavens for strength, faith and courage, makes it all ok for right now.

Add to that one little baby boy in my belly with the hiccups, and this morning I can breathe a sigh of relief.

And just try to take it one day at a time.
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6 comments:

Sara said...

We are so fortunate to have these Tools available to us! So glad you have this support!

Kelsey said...

what did we do before the internet?
Thank you Al Gore :)
loves to Sam

Trish said...

I think i missed something. What is HPE?

Catey said...

Trish-HPE is Holoprosencephaly, one piece of the additional diagnosis that came from the MRI. If you scan down a couple of posts there is a general explanation of it there. It's just much easier to type "hpe" instead of the whole name.:)

Becky said...

Isn't it amazing? I've emailed with a few other parents that have the same thing that my brother John has.. it's so rare, it's hard to find anyone. I believe he's the oldest person alive with it (he'll be 26 in Sep.). You just never know.

((hugs)) SO, SO happy for you!

Amy said...

Catey-Just ran across your blog - Used to be in the EM ward with you but have since moved back to Az. Our son Austin had a very rough start to life. We had a bad pregnancy - he just never grew. In fact he stopped growing between 20-24 weeks. Suffered from severe IUGR and SGA. Drs told us he had a sever chromosomal disorder, Trisomy 18, in which children don't live long after birth and are severely deformed. We did our research, prayed and hoped for the best. He was born at 30 wks- tiny 1 lb 3 oz baby - and was healthy without the chromosomal disease. He's now almost 4 and perfectly caught up. We will pray for you. Expect miracles- they happen every day! Amy Lauritsen amers77@aol.com