Hi, 33 weeks, told baby has achondroplasia...

[Guest guest]

Hi, my name is Tonya and Dh and I are pregnant with our third child.

We have learned over the last few weeks that the baby (Knoah) has

slowly fallen behind in limb growth. To date he is 7 weeks behind and

the peri is certain it is achondroplasia. What type is to be seen. I

am freaking out, not over the fact that he will be a little person,

but over health complications and making sure I have access to

everything and everyone I need to help him through the first years of

life. Besides being just plain old scared, today we were told that his

brain fluid...forgive me, whatever it is called, the pockets that hold

fluid is at 10mm, the max they like to see so I have a scan sceduled

for 2 weeks to recheck it. I have searched and searched for

information and have found very little as far a personal experience.

Just alot of clincal jargon, that I have read and re-read. What do I

have to expect as far as his birth goes? Breathing complications,

surgrey, physical apperence, hospital stay, NICU, etc.

This pregnancy has been full of complications and it seems to just

continue to add on. I am suffering from polyhydramnios, which is

uncomfortable, I am the size of 43 week pregnancy and Knoah is

enjoying the added freedom of his pool. He flip flops from one side to

the other kicking and wiggeling, yet the past 5 NST he has failed

prompting more ultrasounds. The peri believes this is a sporatic gene

mutation since there is no family history. I just don't know where

else to look for information. If ayone can help, I would appreciate

it. I know I am not alone, but I feel I am.

Tonya

[Guest guest]

Hi Tonya,

You aren't alone! There are several parents of Little People on this

group, and there's also a group for parents. It's an open site,

which offers support to parents of Lp's.

Click here:

parentsoflittlepeople2

Polyhydramnios is very common when carrying achon babies, as is larger

head (due to excess water in the ventricles of the brain) and short

limbs. Don't worry - in the vast majority of achon babies, the excess

fluid doesn't mean problems.

Anyway, we'd love to " see " you at POLP2 - there's quite a few parents

there who have been in your shoes, and there's plenty of

help/advice/support there.

Caela

Mum to , 8, achon, New Zealand

>

> Hi, my name is Tonya and Dh and I are pregnant with our third child.

> We have learned over the last few weeks that the baby (Knoah) has

> slowly fallen behind in limb growth. To date he is 7 weeks behind and

> the peri is certain it is achondroplasia. What type is to be seen. I

> am freaking out, not over the fact that he will be a little person,

> but over health complications and making sure I have access to

> everything and everyone I need to help him through the first years of

> life. Besides being just plain old scared, today we were told that his

> brain fluid...forgive me, whatever it is called, the pockets that hold

> fluid is at 10mm, the max they like to see so I have a scan sceduled

> for 2 weeks to recheck it. I have searched and searched for

> information and have found very little as far a personal experience.

> Just alot of clincal jargon, that I have read and re-read. What do I

> have to expect as far as his birth goes? Breathing complications,

> surgrey, physical apperence, hospital stay, NICU, etc.

> This pregnancy has been full of complications and it seems to just

> continue to add on. I am suffering from polyhydramnios, which is

> uncomfortable, I am the size of 43 week pregnancy and Knoah is

> enjoying the added freedom of his pool. He flip flops from one side to

> the other kicking and wiggeling, yet the past 5 NST he has failed

> prompting more ultrasounds. The peri believes this is a sporatic gene

> mutation since there is no family history. I just don't know where

> else to look for information. If ayone can help, I would appreciate

> it. I know I am not alone, but I feel I am.

>

> Tonya

>