has anyone else had experience like this??

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has anyone else had experience like this??

Postby alimarie » Fri Jan 02, 2004 05:31 am

Hey all,

My mom told me about a family friend yesterday who has developed severe pe at 21 weeks. they have been sent to some specialty dr. and i guess this will be their last hope as to keeping the baby safe inside. if he can't help (don't know what he is doing exactly) then she will have to have the baby. i know some of you guys have had really early ones. anyone have one around 21-23 weeks? i am worried about the chances of the baby living. i don't remember the statistics. i am praying for a miracle for this family. what a strain and i know that most of you can relate. thanks!

AliMarie---mommy to Madalyn Anne-born at 35 wks due to severe pe (9/18/2001 4lbs. 14oz.)
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Re : has anyone else had experience like this??

Postby ileana » Fri Jan 02, 2004 06:14 am

I appologize for the tough content of the figures below. The numbers are not written in stone, they are numbers that I remember from by anyway blurry hospital stay...

I don't have experience with 22 weekers, but I know about 24 weekers

The most important indicator is the weight. If the baby is a 21 weeker weightwise, he has more chances. At 24w, the baby weight should be around 650g. Generally, they consider babies under 500g not viable. But miracles are possible...

The earliest baby that lived in the hospital where I delivered was 22 weeks, so if your friend's baby has good weight and they can buy them a few more weeks, that would give him more chances.

Now, about chances... for a 24weeker
~1/3 will die in the first 48h
~1/3 will die in the first 2 weeks
~1/3 will survive: 1/3 of these will be normal, with no serious problems (things like astma, eye glasses or ADHD are not considered serious problems), 1/3 will have serious motor problems, or other disabilities but will be able to have a life, 1/3 will be paralized or unable to leave the bed for some other reasons.

Having a 24 weeker that had only 410g (3 weeks developmental delay) and finding out the figures above, we decided that his life quality would be very low and that we want no heroics done on him. They induced me and he died in the uterus at the first contractions, one hour before birth... This reminds me... as the uterus is still small they will have to deliver through a vertical incision. This will cut (and weaken) the abdominal muscles and will prevent her from ever having a vaginal birth.

If possible, encourage your friends to visit a NICU. This might prepare them for what is to come. Its a very tough road that they started on. I don't even know what a win means... they can have a baby that is ok, but the road to get there will be incredibly rough and there are so many dead ends.

But miracles are possible... check this site
http://www.micropreemie.com/

I'm so sorry they too have to go through this. Can you imagine what sort of New Year's "celebrations" they had?


Ileana 33
Angel stillborn 24w p-e 2/17/03
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Re : has anyone else had experience like this??

Postby maxs mom » Fri Jan 02, 2004 04:01 pm

AliMarie,
Statistics are really fussy at these gestational ages. When my son was born at 25 weeks 534g (IUGR) They told us he had a 70% chance of survival. However, many books I have read say differently. My preemie book called "Preemies, The Essential Guide for Parents of Premature Babies" says survival rates are 20% for 23-weekers to about 65% for 25-weekers. But so much outside of this matters as well. Is the baby small for gestational age (IUGR), are they otherwise healthy (no heart conditions etc), How strong are the lungs (getting the steriod shots before delivery makes a world of difference). The good news is that your family friend is seeing a specialist. Hopefully, they can give her meds to get things under control, but if the case is severe enough and too many things are out of whack for this friend, unfortunatly, there will be nothing they can do for the baby at 21 or 22 weeks. Most hospitals won't even intervene if the fetus is 23 weeks, I think it depends on the hospitals internal policy.

My prayers are with your friend. If she makes it past 24 weeks and the baby is delivered let her know she can contact me about any questions she might have about the NICU stay etc. Also, recommend the book I mention above, it can be ordered on Amazon and is one of the best Preemie books out there.

My email address is k_seyedi@yahoo.com

P.S. the youngest gestational baby I saw make it in our NICU was at 23 weeks and 5 days. And the smallest baby was 514g at 27 weeks (severe IUGR)



Kara
Max, 25 wk, IUGR, 1/20/03, severe PE
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Re : has anyone else had experience like this??

Postby sarab » Fri Jan 02, 2004 09:13 pm

Hi, I was diagnosed with pree at 22 weeks and my doctor told me right up front that if things went from "bad to worse" within the first two weeks that our baby would most likely die, or if she did live, her quality of life would very much be compromised. That is such a sad situation to be in, my heart goes out to your friend and her family. We can only hope that things will work out and she will be able to carry her baby longer.

Also, I would strongly recommend the book that Kara mentioned above ("Preemies, The Essential Guide for Parents of Premature Babies"), I also thought it was by far the best book on the subject. The NICU is truly a roller coaster, full of triumphs and heartbreak, and it's long and emotionally draining. I will be thinking about your friend and her family, they have a tough road ahead. Please let us know how things work out.

Sara, 23
DH, Scott, 25
Maggie Lylas, 6/9/03, 29 weeks, severe pre-e
http://www.babiesonline.com/babies/m/maggielylas/
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Re : has anyone else had experience like this??

Postby alimarie » Fri Jan 02, 2004 11:46 pm

Wow,

thanks you guys for your replies. your sharing makes me even more worried for this family. i don't hear much about the situation because it is someone i do not know personally. i heard tonight that the mother's lungs are beginning to fill with fluid and if she does not improve in x amount of time they will induce.
i am not even sure how far along she is. last date i heard was 21 weeks. i hope this has been delayed in reaching me and that she is further along.
i can not imagine the pain of knowing that you might lose your precious baby. thank you for the responses and prayers for this family. the mother's name is clarissa. she has a 20 or so month old as well. i will update as i hear.

alison

AliMarie---mommy to Madalyn Anne-born at 35 wks due to severe pe (9/18/2001 4lbs. 14oz.)
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Re : has anyone else had experience like this??

Postby laura » Sat Jan 03, 2004 00:04 am

Alison, that's just terrible! Maybe you could pass on the foundation's site address through your mom, if not for now, for later, maybe. Pulmonary edema is really concerning- I'll definitely be praying for them. (and you guys, too!)

Laura-28
DH Jack-30
Allie 5-13-98 (35 weeks-pre-e)
Baby Camille 4-17-03 (36 weeks- htn and oligo)
http://www.babiesonline.com/babies/c/camilleandallie/
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Re : has anyone else had experience like this??

Postby alimarie » Sat Jan 03, 2004 08:12 am

laura,

i feel ignorant for asking this but is pulmonary edema the fluid filling her lungs? thanks for the encouragement. i will try to get my aunt to pass on the website. she is actually the one who knows these people from her church. i hope to get an update soon. they may hear something tomorrow. will let you know

alison

AliMarie---mommy to Madalyn Anne-born at 35 wks due to severe pe (9/18/2001 4lbs. 14oz.)
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Re : has anyone else had experience like this??

Postby laura » Sat Jan 03, 2004 11:47 am

Here's a link to a Medline article about PE- and it lists pulmonary edema as a reason to induce, with a hyperlink so you can read more on the pulmonary edema. If I'm not mistaken, quite often in PE it can result from the decline of kidney function and all the fluid that comes with it.

http://www.nlm.nih.gov/medlineplus/ency/article/000898.htm

I just wanted to double check what I was saying- it wasn't so long ago that I didn't know what that was, but some of our women have experienced it when their PE was really bad. It always seemed that women would mention that they developed pulmonary edema and ended up in ICU or CCU because of it.

Still- as one of the moderators on one of the babycenter boards says, "Miracles happen" (and it makes me feel better when she says it[;)]) Please let us know how this family is doing, and thank you for telling us about them.

Laura-28
DH Jack-30
Allie 5-13-98 (35 weeks-pre-e)
Baby Camille 4-17-03 (36 weeks- htn and oligo)
http://www.babiesonline.com/babies/c/camilleandallie/
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Re : has anyone else had experience like this??

Postby paljane8 » Sat Jan 03, 2004 12:19 am

I just wanted to add my thoughts and prayers for this family too. If there is anyway to let them know we are pulling for them...there really is strength in numbers. It still breaks my heart when I hear experiences like Ileana's. I am not sure why we were blessed with a healthy daughter when I was diagnosed with PIH at 22wks.

Nancy-35
dh-34
ds-8yrs
dd-7yrs
Scott-born 05-14-99 @38 weeks-PE
Janie-born 05-12-03 @37 weeks-PIH, small for gestational age (oligo and low blood flow)
http://www.babiesonline.com/babies/4/4lbs/
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