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Told our daughter may have down syndrome

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anearthw

Member
Children with DS are also at a high risk of serious heart complications. Immediate determination to confirm suspected DS is done in case cardiac surgery is required. This can happen right after birth.

Look, I get this was upsetting, but they genuinely thought your child may have had serious problems.
 


BabyGirl0408

Junior Member
A fever in an infant younger than 3 months old is an automatic lumbar puncture due to the risks of a fever in a baby that young. It would have been completely negligent to just "watch and wait" for 48 hours as the baby could have died in that time without treatment. And if down's syndrome WAS present, that frequently presents with heart problems, which would have made a fever even more dangerous. How you treat an infant just can't be compared to how an older child or adult would be treated, illness can progress very quickly and overwhelm the tiny body in a heartbeat, extreme caution is appropriate.

Your wife's fever was most likely due to the prolonged labor/infection. Did she have proper prenatal care? Was she tested for group B strep prior to going into labor? Did she have any prenatal screening such as ultrasound or blood work to assess her risk for birth defects and genetic defects? I suspect she did not as that would have prepared you for the possibility, or it would have informed you that your risk was low and might have made the doctor less likely to jump to worrying after the birth.
Yes she had everything you mentioned ECMST12 the genetic screening (of which there is a 60% chance its right) which came back negative. And there is a number they give you, but we did not get it. (i.e 1/4,500)
I am 35 this year, my wife 29.

We still have not been told about the underlying cause of my wifes fever, and I am agreeing with you that it may have been due to prolonged labor. The ultrasounds were done early on in the first two trimesters, all normal.

No we did not prepare for any such possibility, which is why all this came as a shock to us, new parents, unsuspecting, fresh, and what should I say ignorant to the greater possibilities that not all pregnancies result in a normal child, even after a normal no risk pregnancy. Can I say that without offending anyone here?

I appreciate everyones thoughts, yes I have been praying. It really bugs me how some of you with the time to reply are more interested in giving everyone, but especially me the OP a piece of your mind. I understand, no offense taken, I am just now getting my mind around our ordeal. In a time that we all think will be blissfully muted by cries for milk and photo opportunities and online chats worldwide with our families all over the place. We had anguish an fear while waiting for a week for the results. Thank you though.

Anyway, the take away is that the pediatrician did everything right, even though we both objected to the spinal tap out of fear for our baby, and even though she was unable to extract a specimen after two tries, its ok, its procedure, its accepted. Im glad I wasnt arrested, but really maybe that would have been a fight worthwhile and making a stand. Testing for meningitis and sepsis.. i know these two are bad, and again at 12 midnight after being awake for 56 hours I tried making the best decision for my baby against moms wishes.

All for the greater good.

Maybe it was the combination of repeated shock, Dr telling us what was about to happen after exhausting all our "options"
trying with forceps first, seeing the result of that
if that failed they were preparing a C section

Baby born face up 8:25 april 8th, with what looked like mom bleeding out!

This was just tough, and with what we know are unhappy with where, when, and how the Dr told us, and the way she decided to mention it, and the opinion being based on my baby freshly delivered, drugged look, needing oxygen, coneshaped head, asian eyes, although today she seems to have more my eyes than Moms.

Thank you all for your time and especially those of you with more expert opinion and less judgmental views.

best...
 

Proserpina

Senior Member
A fever in an infant younger than 3 months old is an automatic lumbar puncture due to the risks of a fever in a baby that young.
That's not automatic in this state - it's not even automatic at 28 days (though recommended and if refused, CPS will be the first call made by the treating physician. That's an entirely different discussion though)

It would have been completely negligent to just "watch and wait" for 48 hours as the baby could have died in that time without treatment. And if down's syndrome WAS present, that frequently presents with heart problems, which would have made a fever even more dangerous. How you treat an infant just can't be compared to how an older child or adult would be treated, illness can progress very quickly and overwhelm the tiny body in a heartbeat, extreme caution is appropriate.

Your wife's fever was most likely due to the prolonged labor/infection. Did she have proper prenatal care? Was she tested for group B strep prior to going into labor? Did she have any prenatal screening such as ultrasound or blood work to assess her risk for birth defects and genetic defects? I suspect she did not as that would have prepared you for the possibility, or it would have informed you that your risk was low and might have made the doctor less likely to jump to worrying after the birth.

Completely agree.
 

Proserpina

Senior Member
Yes she had everything you mentioned ECMST12 the genetic screening (of which there is a 60% chance its right) which came back negative. And there is a number they give you, but we did not get it. (i.e 1/4,500)
I am 35 this year, my wife 29.

We still have not been told about the underlying cause of my wifes fever, and I am agreeing with you that it may have been due to prolonged labor. The ultrasounds were done early on in the first two trimesters, all normal.

No we did not prepare for any such possibility, which is why all this came as a shock to us, new parents, unsuspecting, fresh, and what should I say ignorant to the greater possibilities that not all pregnancies result in a normal child, even after a normal no risk pregnancy. Can I say that without offending anyone here?

I appreciate everyones thoughts, yes I have been praying. It really bugs me how some of you with the time to reply are more interested in giving everyone, but especially me the OP a piece of your mind. I understand, no offense taken, I am just now getting my mind around our ordeal. In a time that we all think will be blissfully muted by cries for milk and photo opportunities and online chats worldwide with our families all over the place. We had anguish an fear while waiting for a week for the results. Thank you though.

Anyway, the take away is that the pediatrician did everything right, even though we both objected to the spinal tap out of fear for our baby, and even though she was unable to extract a specimen after two tries, its ok, its procedure, its accepted. Im glad I wasnt arrested, but really maybe that would have been a fight worthwhile and making a stand. Testing for meningitis and sepsis.. i know these two are bad, and again at 12 midnight after being awake for 56 hours I tried making the best decision for my baby against moms wishes.

All for the greater good.

Maybe it was the combination of repeated shock, Dr telling us what was about to happen after exhausting all our "options"
trying with forceps first, seeing the result of that
if that failed they were preparing a C section

Baby born face up 8:25 april 8th, with what looked like mom bleeding out!

This was just tough, and with what we know are unhappy with where, when, and how the Dr told us, and the way she decided to mention it, and the opinion being based on my baby freshly delivered, drugged look, needing oxygen, coneshaped head, asian eyes, although today she seems to have more my eyes than Moms.

Thank you all for your time and especially those of you with more expert opinion and less judgmental views.

best...
Good luck with your new addition - may she be healthy and wise, and may you enjoy not tooooo many sleepless nights :)
 

LdiJ

Senior Member
A fever in an infant younger than 3 months old is an automatic lumbar puncture due to the risks of a fever in a baby that young. It would have been completely negligent to just "watch and wait" for 48 hours as the baby could have died in that time without treatment. And if down's syndrome WAS present, that frequently presents with heart problems, which would have made a fever even more dangerous. How you treat an infant just can't be compared to how an older child or adult would be treated, illness can progress very quickly and overwhelm the tiny body in a heartbeat, extreme caution is appropriate.

Your wife's fever was most likely due to the prolonged labor/infection. Did she have proper prenatal care? Was she tested for group B strep prior to going into labor? Did she have any prenatal screening such as ultrasound or blood work to assess her risk for birth defects and genetic defects? I suspect she did not as that would have prepared you for the possibility, or it would have informed you that your risk was low and might have made the doctor less likely to jump to worrying after the birth.
I did not realize that there were potential life threatening issues with Down's Syndrome as I know of at least two different families who did not find out until their child was over 6 months old. The actions of the doctors make more sense to me now.
 
Thank you all for your time and especially those of you with more expert opinion and less judgmental views.
It's been asked/mentioned, but you still haven't said where you're located so you seem to be deliberately withholding that. Keep in mind that any legal advise given here is completely useless to you if you are not in the U.S. Different countries have different laws.
 

BabyGirl0408

Junior Member
It's been asked/mentioned, but you still haven't said where you're located so you seem to be deliberately withholding that. Keep in mind that any legal advise given here is completely useless to you if you are not in the U.S. Different countries have different laws.
HorseUrodeInOn, we are in Washington State.

Everything is okay, we are choosing to lay down arms and carry on with our lives and forget this.

Again thank you all.
 

ecmst12

Senior Member
FYI, "conehead" is a completely normal and expected finding in all babies born vaginally. With a forceps or vacuum assisted delivery, it may be more pronounced, but it's pretty universal to at least some degree with any trip through the birth canal. It would not have had anything to do with a suspicion of downs syndrome or be thought of as unusual. And it usually goes away after a day or 2, as you found.
 

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