re: Genetic Disorders. [Support Thread.] [GDS]

Quoting Bec&Nate:“ you guys are so way stronger then i am i still have wat 9-12 weeks to go and i am so scard when my lil ... [snip!] ... will be ok but wow you guys are strong its just for me to even deal with my probs right now then have to deal with his”

When he gets here, you will do a complete 180. I know this is obvious, but you just have to make everything about him. Everything you have ever worried about needs to go on the back burner. It's all about the baby. You'll get as strong as us, we've been dealing with it for a while. You'll learn that doctors aren't always right, and sometimes need to be put in their place. They will do unnecessary things that will just cost you more money.

When Tait was hospitalized last month, we were supposed to stay for 10 days. The first day they did his IV and started meds. which gave him diarrhea and a horrible rash. So they stopped the meds and put him on the same oral medication he'd been on for the last 4 months of his life. They restarted one medication to see if that was the culprit. It was, (and mind you this was over the course of the 10 days) They said since his medication gave him a rash we'd have to stay another 10 days. Tait looked 100% better and I didnt feel he needed to be tortured anymore so when the doc came in on that 10th day I told him "You need to get this IV out of my son, and discharge us NOW or I will pull it out myself and leave. This is unnecesary and your torturing him will stop this minute." And I got sent home that day.

Basically, trust your instincts ladies. No one can care for your child the way you can. PhD or not.

Quoting Tait's Mommy:“ When he gets here, you will do a complete 180. I know this is obvious, but you just have to make everything ... [snip!] ... got sent home that day. Basically, trust your instincts ladies. No one can care for your child the way you can. PhD or not.”

I been through so much with me always being sick i know that when iw as 20 they wanted me to stay an extra month and its like no i cant deal with this all on my own i just wanna be home and not in here and they got pissy and i got discharged

Quoting Tait's Mommy:“ When he gets here, you will do a complete 180. I know this is obvious, but you just have to make everything ... [snip!] ... got sent home that day. Basically, trust your instincts ladies. No one can care for your child the way you can. PhD or not.”

Yeah. I told them, and told them not to pull her drain the first time.
They pulled it, three weeks later she was full of fluid and infection again and needed emergency surgery.

I told everyone. She has a lot of surgeons and specialist, and I asked them multiple times, each of them, PLEASE DO NOT PULL THE DRAIN!

I was right.

Quoting --Aly--:“ Yeah. I told them, and told them not to pull her drain the first time. They pulled it, three weeks later ... [snip!] ... a lot of surgeons and specialist, and I asked them multiple times, each of them, PLEASE DO NOT PULL THE DRAIN! I was right.”

Exactly. Like I said, no one knows or can care for your child the way you can.

Quoting Tait's Mommy:“ Exactly. Like I said, no one knows or can care for your child the way you can.”

It was heart breaking.

Quoting --Aly--:“ I HATE when people do that! GRRR! My daughter's only visible defect is her two extra fingers, and ... [snip!] ... them its not a big deal, and to shut up. And i'm not putting mitts on her to hide them DAMMIT MY KID IS PERFECT! Lol.”

I hate when people point and stare. My SIL has CP and when we go out in public teenagers point and stare, I've almost gotten in fights over it a couple different times. So what if she walks differently from you, she can do everything you can! Oh and my CIL has one leg shorter than the other and no arms....you can imagine the kind of looks he gets. Sometimes I worry about Lincoln when he starts school, I won't be able to defend him forever.  

Quoting Lincoln's momma:“ I hate when people point and stare. My SIL has CP and when we go out in public teenagers point and stare, ... [snip!] ... the kind of looks he gets. Sometimes I worry about Lincoln when he starts school, I won't be able to defend him forever.  ”

People amaze me.
How unaccepting they can be.

Some woman yesterday at Wal-Mart started talking about my kid extra fingers.

I walked away and said back to her; "She's unique and perfect."

Then my friend called to complain about how her ex husband has been gone for 6 weeks, and he only spent two hours with his kid the other day.

Unfortunatly I went off and he wasn't around to hear it.
Her kids are perfectly healthy, what's so effing hard about spending time with them?

I worry about when my daughter wants to start having sex, what am I supposed to do? =(

And little kids are alittle more accepting, my oldest has never said anything about the babies extra digits.

Hopefully your son will be accepted.

I know he's perfect.

And sooooooooooooooooooooooooooooooooooooooooooooooo
adorable!

Hey mommas, I am sorry that you have genetic disorders in your life. I have a genetic disorder called antithrombin III defiency and my son could have it but I am not sure if he does or not, and I couldnt pass it to my other babies bc they didnt make it. I lost a daughter at 35 weeks bc of pre-eclampsia and placenta abruption but bc of my disorder I almost died from bleeding to death and I had a m/c just recently and ended up almost bleeding to death bc of it. I am really afraid to have any more kids now and I have to take lovenox injections and low dose aspirin when I am pregnant. Also I may have a protein s defiency....one of my doctors told me that when I was in the hospital but I was so out of it that I didnt even ask about it. So I need to ask about that next time I am there.

Quoting --Aly--:“ I just tried to Wikipedia that, but all I got out of my quick read was that it causes Anemia? I know there has to be more. Lol. Dumb it down for me.”

Here is some info about it...



Thalassemia


Thalassemia is a general name for a group of inherited blood diseases. They involve abnormalities in hemoglobin, the oxygen-carrying part of the red blood cells. Hemoglobin is mainly made up of two kinds of protein, called alpha and beta globin. Individuals with thalassemia do not produce enough of one (or occasionally both) of these proteins. As a result, their red blood cells may be abnormal and unable to carry enough oxygen throughout the body.
The two main types of thalassemia are called alpha and beta thalassemia. Individuals with alpha thalassemia do not produce enough alpha globin, and those with beta thalassemia lack sufficient beta globin. There are a number of different forms of alpha and beta thalassemias, with symptoms ranging from mild to severe.
Thalassemia is among the most common inherited disorders caused by a single abnormal gene. More than 100,000 babies worldwide are born each year with severe forms of thalassemia, according to the National Academy of Sciences (1). Thalassemia occurs most frequently in people of Italian, Greek, Middle Eastern, Southern Asian and African ancestry.
What is alpha thalassemia?
There are at least five main types of alpha thalassemia. These are most common in people of Southeast Asian, Indian, southern Chinese, Middle Eastern, and African ancestry (2). There are four genes that control the production of alpha globin. The severity of the condition is determined by how many of these genes are missing or abnormal.

• Silent carrier, the mildest form, has one alpha globin gene missing or abnormal. Affected individuals generally have no symptoms, but they can pass on the genetic abnormality to their children.
  
• Alpha thalassemia minor, in which two alpha globin genes are missing or abnormal, usually does not cause major health problems. However, affected individuals may have mild anemia and can pass the condition on to their children.
  
• Hemoglobin H disease is caused by having only one normal alpha globin gene. The condition results in abnormalities in the red blood cells and rapid destruction of these cells. Most affected individuals have mild to moderate anemia and can live fairly normal lives. The anemia may temporarily worsen when the individual has a viral infection or when they are treated with certain medications (such as sulfa drugs) (3). Some affected individuals eventually develop complications, such as an enlarged spleen and gallstones (3). Individuals with hemoglobin H disease should receive regular medical care to detect and treat these complications. Some may need occasional blood transfusions (4).
  
• Hemoglobin H-Constant Spring is a more severe form of hemoglobin H disease. Affected individuals have one normal alpha globin gene, plus one abnormal one that carries a specific mutation (change) called Constant Spring. Those with this condition generally have moderate to severe anemia and often develop complications, such as an enlarged spleen. Some need blood transfusions from time to time, such as when they develop an illness with a fever, while others need more frequent transfusions (3, 4).
  
• Alpha thalassemia major, the most severe form, results from having no genes for the production of alpha globin. Affected fetuses suffer from severe anemia, heart failure and fluid buildup. They usually are stillborn, but some die in the first hours after birth. In rare cases, babies diagnosed and treated before birth with blood transfusions have survived. These babies require lifelong blood transfusions (4).

Sorry for not replying girls.

My AC busted ans it was 95 degrees in here, so we left!

But now we're back home, and i'm back!

Quoting --Aly--:“ Sorry for not replying girls. My AC busted ans it was 95 degrees in here, so we left! But now we're back home, and i'm back!”

I would die with out AC! I live in front of it. I really admire you for all your doing with your daughter and how strong of a woman you are. I don't think everyone would be able to handle those types of things.

Quoting Courtney_Bly[[HBC]]:“ I would die with out AC! I live in front of it. I really admire you for all your doing with your daughter ... [snip!] ... with your daughter and how strong of a woman you are. I don't think everyone would be able to handle those types of things.”

I just think I deal with it, I guess?

I feel lucky. What she has is fixable.

How's your pregnancy going?

Quoting --Aly--:“ I just think I deal with it, I guess? I feel lucky. What she has is fixable. How's your pregnancy going?”

Thats all we can do. Its going great, I found out last week, that they may repair his lip before he even comes home for the first time. I was a little sad because they did see that it does effect his palate, but Im not worried. This isn't anything that can't be fixed. However Im so ready for this to be over, its so hot and Im all sweaty and uncomfortable. Next time I will plan to conceive in the summer!

Hello Ladies, I have waited for a long time for BG to have a thread like this. So my oldest has a disorder and the great debate is if it is genetic or not. Most think it is genetic with triggers that make it obvious, my son has Autism.

Quoting Courtney_Bly[[HBC]]:“ Thats all we can do. Its going great, I found out last week, that they may repair his lip before he even ... [snip!] ... so ready for this to be over, its so hot and Im all sweaty and uncomfortable. Next time I will plan to conceive in the summer!”

Oh, girl.

I had a summer pregnancy with my first, so I had a winter baby. She got a lot of colds.
I had a winter pregnancy with my second and I was CONSTANTLY SICK.

So a prenatal surgery?