prenatal fetal measurments in DS

[Jackie]

Can someone who knows....let me know what sort of fetal ultrasound measurements they had before their baby was born...in particular femur and head......this is now a REAL concern with my neice who is almost due....and they are looking perhaps beyond it being just DS.

Jackie...mom to Emily 24

[momofrussell]

WOW, Jackie.. those kinda notes are in the doc notes/files.. and usually parents don't get those notes they take down. I don't know if I have any of that stuff or where to look!

What are they thinking it might be now??? I sure hope all goes well!!!!!

A.

[donnac]

Jackie -- My 20 year old has a casual friend who has a baby boy with Ds. I spoke with her only once during her pregnancy, and she too said that the drs. thought that there was more to it than the Ds using those measurements also. However, she went on to have a beautiful, healthy son. Yes, he has Ds, and she knew that he would because she also had an amnio done, but the drs. led her to believe that there would be some physical problems. She is not a well educated young lady, and I wasn't sure that I completely understood what she tried to tell me (and she really wasn't ready for parent to parent support at the time). I thought at the time that they told her that everything measured too small, but again, he was born healthy. He was a little premature which prolonged his hospital stay, but as far as I know, no heart, gastro., or respitory (sp) problems.

I hope that this helps some, but I know that the doctors generally try to prepare you for the what ifs, but sometimes it can be very frustrating and scary. I went through that when I was pregnant with Tyler. I had problems at 10 weeks, had an follow up ultrasound in the drs. office at 11 weeks that showed the fluid on his neck, and went on that same day by myself to a local hospital to have a level 2 ultrasound done. At the time, they didn't know that the fluid was an indicator of Ds. They had me on the table for at least 45 minutes with what felt like everyone in the building coming in to look at my baby and tell me what it might be. I left there with at least a dozen possibilities (hole in his heart, spinal problems, water on the brain, etc). Finally a week or so later, we spoke to a genetic counselor who suggested Ds and an amnio. At 15 weeks I had the amnio, and at 17 knew that it was only Ds. So, I was extremely scared from week 11 to 17, and then just plain old scared from week 17 to his birth.

Donna

[Jackie]

Well her history was....everything normal until a high Triple Screen....then a level 2 ultrasound with a highrisk specialist who apparently said he didnt see any more need for ultrasounds...didnt see any markers except for the echogenic??? white spot on the heart which is supposedly a soft marker for DS...and has nothing to do with heart problems. He told her he sees many of these each day...and it should go away ...which it did.

For some reason they have had multiple ultrasounds....but supposedly everything has looked ok.

Then at about 33 weeks she got concerned because she was feeling decreased fetal movement. Another ultrasound showed the baby transverse...and placenta on the front....and she was told the placenta was absorbing most of the movement....cuz on ultra sound it was moving well.

Then the next week the doctor expressed some concern about the babys growth...and...its sort of all gone downhill since then....Every weekly visit they get hit with something new...and have had other ultrasounds. A week ago DS was mentioned again....and this week...they came home talking of microcephaly...not sure if THEY brought this up from the extensive online exploration they are doing...or if the Doc mentioned it as a possiblity.

Of course eveyone now is in worse case scenario mode and I feel so helpless....

I cant imagine what it must be like for my sister who was so excited about her only daughters first baby ......I have to say....if you had told me 10 days before Emily's birth 24 years ago that my baby had a birth defect....I would have said.....NO WAY...cant do that...cant go there...LOL....oh my ....What a terrific adventure I would have missed!!!!

Of course now it doesnt do any good to try and reassure her that they will all rise to the occasion...no matter what it might be.....its just going to be a LONG....10 days....and I do so...want to be a support system and say the right things. I think perhaps...listening ...now...is better than talking.

But keep all of us in your prayers....

Jackie mom to Emily 24

[Connie]

Jackie,

Here are the messurements from my ultrasound w/Collin at 20 weeks.

BPD -- 4.60 cm
HC -- 16.77cm
AC--15.20 cm
FL -- 3.17 cm
weight -- 335gms or 12oz

When I got these messurements I was really concerned because the way I figured it Collin was going to be over 9lbs 2oz and over 22 "....and the doctor just laughed at me and said he would be big but not that big. Man he could have never been more wrong. Collin was born weighing 9lb and was 22" long.

But with my daughter she was diagnosed with massive hydrocephalus at 7w3d....because the doctor reading the ultra sound did not know what he was looking at.

Reassure her doctors do make mistakes and misread things and everything will be ok even if it is not as they have planned.

Hope these help
Connie

[snickers71801]

I wish that I could help you. I remember the doctor tellling me, but I never wrote any of that stuff down. I wrote everything else down, but not that. Now I wish I would have. But during my pregnancy, they did not know that my daughter was downs. I was suppose to have an amnio done on a mon. and my mother had a heart attack on sun, and never made it to the appt. The next one scheduled we had a blizzard and couldn't get to town. The doctor and I discussed it and since I was supposably "low risk", he did not feel that it was necessary. It would not have made any difference to me. I am sometimes glad that I did not have one, that way I did not panic and just dealt with it when she was born. I was scared to death through my whole pregnancy anyhow. I kept telling my mother that something was wrong, just knew it. But everything turned out!!!

[Chris]

Jackie,

Sarah's femur always measured shorter than normal and her head was slightly smaller than normal. I had a ton of ultrasounds because we knew she had Ds and an AV canal defect.

The week before she was born I had an ultrasound and was told that the femur length was extremely short and she may also have dwarfism. That was the last straw for me and I cried and cried. I couldn't imagine that one more thing could be wrong with my baby. As it turned out, the ultrasound tech and radiologist were measuring her arm, not her femur! I had another ultrasound on the Friday before she was born and everything looked fine.

I am amazed that some medical professionals can be so sloppy. I know that I have told this story numerous times but here I go again. The nurse at the geneticist office called me to tell me the results of my amnio. She said I had a normal, healthy little girl. I called and emailed everyone I knew and was exuberant! My husband and I went out to celebrate. Then on my husband's birthday the phone rang. It was the geneticist. She told us that they had made a mistake when laying out Sarah's chromosomes and she did have trisomy 21. I couldn't believe how incompetent this doctor was. She was specifically checking for Ds because of my age and Sarah's thickened nuchal fold. All I am saying is that doctors and techicians make mistakes all the time. They also scare the daylights out of parents by telling them all the horrible things that may be wrong with their child.

I am praying that your neice has a healthy child.

Chris

[coopersmoma]

Jackie,
These are Cooper's measurements at 30 weeks
HC 28.43
BPD 7.86
AC 26.17
FL 5.07
I have other measurements that were done when I was about 35 weeks but can't locate them at the moment. Hope this helps and I will keep everyone in my prayers.
Wendey

[Jackie]

Thanks everyone ...I will pass this on.....I think at this point my neice is as apprehensive about the impending C section as she is about the problems with the baby...she has never been in the hospital before...for anything ....

Jackie mom to Em 24

[ourangelalicia]

The only thing I KNOW of with Ali was that her femurs measured a week short at 14 weeks gestation. I believe everything else was normal throughout the pregnancy. (Ultrasounds at 8, 12, 14, 20, and 28 weeks.) I doubt that would have been the case if I'd been seeing someone more experienced however.

[Jackie]

After a long talk with my nephew-in-law....I think this baby might have more serious issues than just DS....Sounds like they are pretty much in the dark and now of course looking at worse case scenarios.....but the babys head is in a very low percentile.

The C section is scheduled for Friday at this point due to the baby being breech....

So just keep our whole family in your thoughts and prayers....this is her first pregnancy.....

Jackie mom to Em 24

[TriciaF]

Hey Jackie,
Life has me strapped for time recently...but I have been popping in for an update on your neice when I can. Just wanted to say I am sending prayers up immediately. I think of you all often and wish I could be here more...hopefully when school starts back. I'm so sorry she has had to go through all of this worry in her pregnancy...esp her first. She and the whole family surely deserves some down time and pampering.

I know that Patrick's head has always measured small...not sure if he meets the medical measurement for microcephaly or not....but I wonder how accurate these things can be in utero.

Hugs to you all.

[meghans_mom]

Jackie - I know this is late, but MM's femur measured "slightly shortened" and at one point they thought she had intrauterine growth retardation...because my belly measured too small? can't remember the reason but the child was 21 inches at birth.
anyways - the real reason i'm writing is to add my prayers for your niece and nephew. I hope everything goes well this Friday, and with the baby.
laurie

[SuziF]

Jackie,
I know I havn't seen her post in awhile, but maybe she still reads & will respond. Amanda with Kristoph who is same age as Merideth went thru some similar prenatal diagnosis. They were prepared for other probs with dwarfism being one mentioned alot. She wound up having him by emergency after being involved in a serious traffic accident which put them both in jeopardy. I first got to know her on one of the pregnancy boards, I believe it was over at babies today. you could check there for info.

Hugs,
Suzi

[Jackie]

thanks....

Jackie