3rd percentile and absent nasal bone

[Stephytiggs]

Level 2 scan today revealed twin two is on the 3rd percentile, had an absent nasal bone and restricted blood flow through the placenta. Two small holes in her heart were also detected.

The consultant is saying it's highly likely a chromosomal issue.

Does anyone have any experience or can help me out? We have been told to expect our baby girl to not be with us in the next couple of weeks...

 

[Love4you]

I have no personal experience but just from symptoms it sounds like it could be trisomy 18 or 21?
Will you have an amino to find out more info?
I'm so very sorry for you and your sweet baby girl. I hope the doctors can get you the help you both need.

 

[Stephytiggs]

I have no personal experience but just from symptoms it sounds like it could be trisomy 18 or 21?
Will you have an amino to find out more info?
I'm so very sorry for you and your sweet baby girl. I hope the doctors can get you the help you both need.

Hi hun. If she's still here at 28 weeks I'll have the amnio, they won't do it before then in case it sends me into labour. Ive researched both, baby has no other symptoms so I'm pretty sure it's not 18, I'm praying that it would be 21 cous I know she can survive through that!! Xx

 

[pinkpassion]

No experience , just wanted to send hugs to you!!! I'm sorry you are going through this and I hope you are able to stay strong and positive.
My friend was told her son had no nasal bone and said he had other markers for trisomy 18/21.. he also was not growing. She ended up having to deliver him in emcs, and he ended up with no chromosomal abnormalities... her placenta just wasn't working well which caused all the issues..
I don't know if that story helps, but just know it's not always what it looks like!!

 

[Stephytiggs]

No experience , just wanted to send hugs to you!!! I'm sorry you are going through this and I hope you are able to stay strong and positive.
My friend was told her son had no nasal bone and said he had other markers for trisomy 18/21.. he also was not growing. She ended up having to deliver him in emcs, and he ended up with no chromosomal abnormalities... her placenta just wasn't working well which caused all the issues..
I don't know if that story helps, but just know it's not always what it looks like!!

Omg thanku so much!!!! Thats exactly what I needed to hear!! I could actually cry thanku. Did you know what gestation he was born xx

 

[pinkpassion]

He was born at 32 weeks but was the size and lung maturity of 26 weeker! I'm glad that helped, I hope you get good news!!

 

[Shanslee]

I'm so sorry you are going through this.

I'm dealing with somewhat of the same thing right now. One of our twins is fine, but the other is not...she has many problems.

Research helped us a great deal. From the moment the shock began to wear off, we started researching everything. What we found wasn't always promising or good, but at least we had the information, and that helped us understand what was happening, what was going to happen, and what our options were.

I wish I could offer more help. I'm happy to listen if you ever need to vent.

 

[Stephytiggs]

I'm so sorry you are going through this.

I'm dealing with somewhat of the same thing right now. One of our twins is fine, but the other is not...she has many problems.

Research helped us a great deal. From the moment the shock began to wear off, we started researching everything. What we found wasn't always promising or good, but at least we had the information, and that helped us understand what was happening, what was going to happen, and what our options were.

I wish I could offer more help. I'm happy to listen if you ever need to vent.

Hi shanslee xx I'm so sorry you're going through an awful time too. If you want to talk please get in touch.

I have googled and Googled and googled some more but info is so limited in these situations.

The hardest part is going through everyday not knowing if my baby Lola is still with me 😭 xx

 

[Shanslee]

The hardest part is going through everyday not knowing if my baby Lola is still with me 😭 xx

This is one of the hardest parts for us, too. We are in the midst of non-stress tests, and of course we have a lot of ultrasounds...the docs give us a copy of all the monitor readouts, and we request a lot of ultrasound pics, because we never know when "this time" will be the "last time." It's so good to see her on the screen but the wait between is so upsetting.



When it comes to research, do you have access to any of the "official" reports? If you can get those, you can obtain the medical terms that make it easier to search medical journals. That's what helps us the most so far...all other information is too conflicting to make much sense.

 

[Stephytiggs]

The hardest part is going through everyday not knowing if my baby Lola is still with me 😭 xx

This is one of the hardest parts for us, too. We are in the midst of non-stress tests, and of course we have a lot of ultrasounds...the docs give us a copy of all the monitor readouts, and we request a lot of ultrasound pics, because we never know when "this time" will be the "last time." It's so good to see her on the screen but the wait between is so upsetting.



When it comes to research, do you have access to any of the "official" reports? If you can get those, you can obtain the medical terms that make it easier to search medical journals. That's what helps us the most so far...all other information is too conflicting to make much sense.

The thought of out next ultrasound is making me feel sick to be honest, I don't think I could cope not seeing her heart beating anymore. I know I have to be positive but it's so hard. I'm finding a lot of comfort in positive iugr stories. I haven't been officially told I have this issue but it's quite obvious, everyones stories are so similar. I just joined a group on facebook if this would help you.

I dont have access to official reports. I think if i look any deeper into this im going to cause myself a lot more stress. Trying not to constantly google but i just want answers x

 

[Shanslee]

The thought of out next ultrasound is making me feel sick to be honest, I don't think I could cope not seeing her heart beating anymore. I know I have to be positive but it's so hard. I'm finding a lot of comfort in positive iugr stories. I haven't been officially told I have this issue but it's quite obvious, everyones stories are so similar. I just joined a group on facebook if this would help you.

I dont have access to official reports. I think if i look any deeper into this im going to cause myself a lot more stress. Trying not to constantly google but i just want answers x

There are SO many positive stories out there! I have found some great "against the odds" stories for IUGR babies on the Inspire preemie board...I'm not on Facebook, but if the stories in the group are available for anybody to read, I would love to take a look.

You might have already mentioned this upthread, and I missed it...when is your next ultrasound?

 

[Stephytiggs]

I know. You come out of the consultant appt thinking that it's the end. Until. You read all the good news stories you realise there is so much strength in these babies, but the doctors dont tell u the happy endings!! It's a closed group hun unfortunately so you can't read unless you're a member.

My next appt is 10 days away. Its agonizing. When is yours x

 

[Shanslee]

My next appt is 10 days away. Its agonizing. When is yours x

Mine is on Tuesday, so...about four days. Each time we go we get more information, and that's good for us...it helps us cope with it.

I really hope that your baby is one of those great success stories!

 

[Stephytiggs]

Thanku and u hun, ive just posted in the inspire boards hopefully someone can come along with a happy story soon x

 

[Shanslee]

I was just thinking of you today and wondered how things are going? I hope you've received good news lately.

 

[pinkpassion]

Shanslee how is your baby doing??

Stephy, thinking of you hun, I hope all is well!!!!!

 

[Shanslee]

Shanslee how is your baby doing??

Stephy, thinking of you hun, I hope all is well!!!!!

Thank you for asking...unfortunately, things haven't gone well for my little one. My other twin is thriving, so that's what we are holding onto.

Stephy, you definitely have a lot of people thinking of you and hoping for good news! Please don't hesitate to get in touch if you need to talk.

 

[pinkpassion]

O no shanslee.. did you loose it?? I'm so glad your other one is thriving but I'm so sad for your other!!!!

 

[Stephytiggs]

Hope your ok shanslee...xxx no news until Wednesday for us...counting down the hours! I can feel her movement more lately so that eases my mind xx

 

[BunnyN]

just read this thread and hoping you get good news. Not the same circumstances but after she was born DD fell quickly from the 95th% to bellow the 3rd%. It turned out to be a food allergy issue which meant she just wasn't absorbing the nutrients she needed. It was*worrying at the time but other than the allergies and being really skinny she had no other health problems and was quite advanced with things like rolling over and speach. Eventually the problems were resolved and she is large for her age again at 2 years. Just to show that low weight in itself doesn't always mean the worst it can just be a nutrient issue.