Thursday, January 28, 2010


I really need to get some stuff off of my chest.

Last night I was searching for groups for Alagille's syndrome, just so I could talk with other parents about it, compare things, and just have support in general. I couldn't find any. Seeing that there aren't any online for it just makes me feel alone in the struggle. I don't know anyone who has this disease. No one. The doctor Blake sees in Gainesville said that he has only seen about ten patients with Alagille's syndrome, and Shand's is supposed to be the main hospital for the whole southeast. And that's all he's seen? That's crazy. I didn't think it was quite so rare. Does that mean that ther eare only about ten people in the southeast that have this disease? Or are a lot going elsewhere? I know Philadelphia has a hospital for Alagille's syndrome.

I'm trying to be brave, especially for him, but a small part of me is scared. Make that a big part. I'm pretty sure he'll be okay, but still. There's a 10% mortality rate that goes with this. Mortality. That word just sounds so grim. That's higher than I'd like. Everything that has happened to him has been uncommon. The two vessel cord had a small percent of happening. His toes not developing all the way had a small chance of happening. Alagille's syndrome had a small chance of happening. His HIDA scan didn't work, there was a small chance of that happening. Blake is the king of making rare occurrences happen. So that lowish mortality rate doesn't exactly make me feel better or put me at ease. Everytime I read that part when I'm reading up about it, my stomach churns. I have problems seeing Blake as a toddler, but can anyone really see that? I just hope it's not a premonition about the future. I had problems seeing myself holding a baby girl when I was pregnant and didn't yet know the gender. I didn't really want to believe it, so I pushed it aside, but it came true. I hope this isn't that type of thing. I don't think I could function if I lost him; I would be lost. He is the absolute love of my life, and I would literally kill for him if I had to. He's made me into such a strong person, I think. Can you be strong and still be scared? People always tell me that it'll be okay and it'll be nothing. I don't think they realize that this won't go away, he'll have it his whole life. There is no cure. Blake will have a life full of doctors appointments and tests, and I'm so sorry for that. I know it could be worse, and I'm very thankful that it's not, but still I miss the early days when I didn't have to bother with at least three doses of medicines a day. I know it's not my fault that this happened, but it's really hard to not think in the very back of my head, "what can I do better next time around to prevent this?" The answer is nothing. If I don't carry the gene, then I most likely won't have another kid with this, unless my next partner has it. I hope not.

In my search for groups, I came across this group of moms whose babies were diagnosed in utero with fatal diseases and they decided to carry to term. It was so sad. I was crying while reading all of their stories. Most stories were of their babies clinging to life for an hour or so before "growing their wings." Some less, some more. This one woman had to have a c section, and she said that it was the hardest thing to do because not only was she choosing her daughter's birthday, but also the day she died. I can't even imagine. i remember that there was a time or two that I was scared that Blake wasn't gong to make it. We didn't know what to expect when he was born, would he be able to breathe, would he need immediate surgery, etc. It was a horrible, horrible feeling just thinking about him possibly not making it. But to know that your baby won't make it. To know that your angel wouldn't make it to the first year, the first week, even the first hour of life. It's so unfair. Then to decide to carry it to term or to decide to terminate it then. That would be so hard and I hope to never ever be in that situation. And then for next time, being terrified that it will happen again. Having to go through all of that grief again. I don't know if I could handle it. i think if given the choice, I would carry to term. As one mom put it, I would want to give the baby a chance to take a breath, open his or her eyes, before leaving. But I would never want to deliver. That would be the hardest part, the labor of such a delivery, knowing that you are slowly killing your baby. Again, I hope to never be in such a situation. I hope I die before any of my children.

Sometimes I do feel alone. I feel like I have to be strong for everyone. I am a calm person, and in general I handle it well. But I feel like I can never just break down for a while without people telling me it will be okay. I know it will be, but I just want to put my worries out there and get them off my chest. Just for some one to listen, I don't really need advices.

Also, if one more person tries to tell me that I'm too young to be a mom and that it's hard, I think I'm going to scream. Just because I'm young does NOT mean that I'm a bad mom. Age is just a number. I'm not even that young. I've been an adult for a while. I'm not even a teenager. I have a job, and the only thing the government pays for is his formula and his doctor visits, which I put into the system through taxes anyway. Do not try to tell me how hard being a parent is. I think I might know. Don't tell me that I don't really know. You have no idea what I've been through. I can promise you its more in his first six months of life and even prenatally than what their kids have been through (the ones who tell me this). And just because its hard doesn't mean that I would even thing about trading it for the world. I love being a mom, and I've always wanted to be a mom. I get that lecture way too often, and I'm just sick of it.

Anyway, on a much brighter note, Blake sat up for the first time today unsupported for a while!!! Yay! :D Growing up so fast. <3



Renee said...

AGS is also on facebook and there is one yahoo group that I am aware of. Make sure to sign up with the Alagille Alliance. They send out a newsletter every few months. You are not alone.


Ben, Sara, and Olivia Huelsbergen said...

Hi -
I was directed to your blog through an e-mail alert I have set for any new postings about Alagille Syndrome on the web. The Alagille Syndrome Alliance at is a great resource. There is a fairly active board there that Renee mentioned. Over on Facebook look up Alagille Syndrome Alliance there is an active presence of us there. Feel free to send a friend request to myself (Benjamin Huelsbergen or my Wife Sara Sloma Huelsbergen on FB). While our daughter was not one of the lucky Alagille Kids (she died at 6 months) there are a lot of success stories out there, we're all very willing to help. Take care and hope to hear from you. Ben & Sara Huelsbergen

Anonymous said...

This broke my heart. Sabrina mentioned this blog earlier today and I thought she meant a different one. I am glad I came to check. You are not alone, even though I know you feel like you are. My sister didn't have alagille's syndrome but she was handicapped. We practically lived at Sacred Heart and spent many holidays there. So even though my mom doesn't know anything about Alagille's syndrome, she knows about the trips to the hospital and the doctors giving her the run around. She knows what it is like to not know anyone with a child who has the same diagnosis as her own. You can talk to her any time. She understands. And over time, you will find support groups and information. You will make friends with people who have children with Allagile's. I hate to even think about the mortality aspect of it. You're right, 10% isn't ver high, but it's TOO high when it comes to your child's life. He WILL have this all of his life, but he will understand when you explain it to him. It WILL be okay and he WILL be okay. If you ever want any help doing any research or finding support groups or ANYTHING, you know my number. I'd be happy to help. I read about it on my own anyway, so together we can move MOUNTAINS! :) I LOVE you both so much and am SO happy to have you both in our lives! Just imagine the day we are sitting in the front row of Blake and Lily's wedding. ;]

Nana Juls said...

Your post brought tears to my eyes. I see Renee, Sara and Ben have hooked you up with the AGS site... You will find many wonderful Moms and Dads that have been where you are today. Like many things, the first post is the hardest.

My grandson Jake is 18 months, he also has AGS - he is doing very well and he is a really happy little guy.

And just so you know - my Dad was 20 when I was born, I was 20 when I had my first daughter, she was 20when she had her first son --- 20 is a great age to have a baby --- I now have 3 grandsons and it is so cool that I am young enough to keep up with them.

Juls (Nana to Jesse 9, Javier 3 1/2, Jake 1 1/2

sheila riannon said...

Wow, I just figured out that I was getting comments! So my bad for the super delayed response!
Thank you all, I was just having a rough night. I've met a lot of parents with Alagille's through my fb group, and I've finally found support groups! Yay! Thanls for the info. :)