5 posts / 0 new
Last post
jgriffith's picture
Last seen: 3 years 7 months ago
Joined: 08/20/10
Posts: 420

Hi everyone!

I have 4 children, ages 9,7,4, and 8wks. My pregnancy with my youngest was healthy, no complications. When she was born on 5/24, the NICU doc at the delivery immediately noticed something was wrong. They call a bunch of specialists in and ended up transferring her (and me) to a higher level facility where she spend 9 days in the NICU for tests. She was finally diagnosed with a large hemangioma on her diaper area, which resulted in a tethered spinal cord and exstrophic bladder. It's called PELVIS syndrome. It's very rare, so there isn't a lot of information out there on it. We have an excellent team of specialists here in Indianapolis which I am grateful for, but we are only starting to learn what her next few years will be like. We have one surgery planned for October (for her spinal cord), the bladder will follow, and we are treating the hemangioma with propanolol, a beta blocker, that requires frequent monitoring of her blood pressure and for her to eat every 5 hours, even at night, to keep her blood sugar stable. It is very overwhelming to have a child with a birth defect, especially when I have three others who are healthy. Her needs alone keep me hopping, but add everyone elses needs and I am one tired momma. I am glad I found this board, it will be encouraging to me to meet other moms with similar situations!

Last seen: 3 years 6 months ago
Joined: 05/05/04
Posts: 435

Oh my. That's a lot to deal with. Tom had surgery at 4 months old and it was much harder on me than him. He bounced back quickly - just a few days of tylenol (he never even needed tylenol 3) and he was fine. emotionally I was sort of messed up for a while, so expect that and make sure you're taking care of yourself.

For clefts, at least, once you get through the first hurdle (hurdles if the palate is cleft too) then you normally have a relatively easy ride for a while. I hope that after you get her through these hurdles things calm down!


wishing4agirl's picture
Last seen: 2 years 8 months ago
Joined: 09/11/03
Posts: 917

I'm not sure how I missed this post. I'm so sorry.

Welcome to our group!!! It's not a board you hope to join, but it's an amazing group of ladies.

Eli is the main kiddo you'll "hear" me talk about since I worry the most about him.

Again welcome and sorry my welcome is so late.

kerina313's picture
Last seen: 3 years 3 months ago
Joined: 09/10/05
Posts: 60

Jaime - welcome to our family here. I'm sorry that you got thrown for a loop right after she was born. I kind of know that feeling, the difference for me is that I already had been through different issues. One thing you'll probably learn along the way, these kids are something special -- not because of their issues, but it's just them.

I don't get on as much as I would like, but these women here are great.

CamelNoodle's picture
Last seen: 1 year 5 months ago
Joined: 07/28/04
Posts: 908

Hi Jamie,
Sorry to hear about Ellie's issues. This is a good group of ladies here, so stick with us.

As an aside, my son had a hemangioma on his chest. When undergoing chemotherapy for cancer, his hemangioma shrunk as well. We talked to the doctors about it and they said that some chemotherapy drugs are used to treat hemangioma . Just letting you know that just in case it's something you want to look into. As parents, we need to be advocates for our kids, so anything more you know about Ellie's condition, the better.

I checked out her CaringBridge site. I'll keep following her story and wishing all of you well.