Hello.I am a midwife helping an Amish couple planning a home birth in the fall. Their second child was diagnosed with CF when she was six months old. They are aware that they have a 25% chance of having another child with CF.As their caregiver, I am curious about the possibility of a "mucous plug" that CF fetuses can develop. Apparently, sometimes they can be detected by a prenatal Level II ultrasound. Can anyone direct me as to where to get more information regarding this and any other info that I should be aware of that may be a risk to the newborn.Thank you all so much,Sylvia
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Home Birth
- Thread starter anonymous
- Start date
Emily65Roses
New member
This is not at all in reference to your question, and if you don't feel comfortable answering it, that's fine... But, how in the world does an Amish couple keep a CFer alive? I'm really curious.
Sylvia,
I would contact a CF center, which are located at major hospitals. Are you in Oh or Pa? I live in Ohio and we have a ton of Amish, that is why I'm asking. If you e-mail me with your location I can get that info to you. I will do this because, my sister (who is not Amish) is going on her 2nd home birth. She doesn't have CF and the baby won't either, but I know how important this is for her. So good luck and I hope to hear from you. Just put the topic as CF related so I don't delete it.
Sincerely,
Kelli
kellimylove@hotmail.com
I would contact a CF center, which are located at major hospitals. Are you in Oh or Pa? I live in Ohio and we have a ton of Amish, that is why I'm asking. If you e-mail me with your location I can get that info to you. I will do this because, my sister (who is not Amish) is going on her 2nd home birth. She doesn't have CF and the baby won't either, but I know how important this is for her. So good luck and I hope to hear from you. Just put the topic as CF related so I don't delete it.
Sincerely,
Kelli
kellimylove@hotmail.com
Purplelungs
New member
Emily I think I asked the same question a while back, dont know if it was here or somewhere else....But someone told me that there are certain hospitals in their area cater to Amish...or at least thats where most of them go....They also get premission from the leaders and elders of the community for certain things, like maybe electricity in the home for medical reasons only.....Not sure if I am remembering this correctly or not. So please someone correct me.
I do know there are "old fashion" ways to treat cf....like hand pounding instead of the vest, if you need ivs you can use gravity instead of a pump....
I would still like info on how they do treatment on Amish children/adults with cf....
As for the original question. Is it not possible to go to a hospital or call a doctor and ask or would that cause problems for the family? I would hope given the situation that it shouldnt be to hard to ask a knowledgable doctor what to look for. Given your in an area with the Amish its their way to give birth at home (also becoming somethign alot of families want as well)...hopefully a doctor there would understand. All I would know about a mucus plug is they wont poop when their supposed to, but do not listen to what I say because I really have no idea.
I do know there are "old fashion" ways to treat cf....like hand pounding instead of the vest, if you need ivs you can use gravity instead of a pump....
I would still like info on how they do treatment on Amish children/adults with cf....
As for the original question. Is it not possible to go to a hospital or call a doctor and ask or would that cause problems for the family? I would hope given the situation that it shouldnt be to hard to ask a knowledgable doctor what to look for. Given your in an area with the Amish its their way to give birth at home (also becoming somethign alot of families want as well)...hopefully a doctor there would understand. All I would know about a mucus plug is they wont poop when their supposed to, but do not listen to what I say because I really have no idea.
About 10-15% of cf children are born with meconium illeus, so the couple is looking at about a 3% chance of having a baby with cf and meconium illeus. Not very likely, but it does happen and you are right to be concerned. It happened to our family. Our first child was diagnosed with cf when she was five weeks old. Our second child was diagnosed with cf by a high level ultrasound that showed "bright bowel" which indicated meconium illeus. He did end up having a meconium illeus. Without medical treatment from a hospital, I would think that it would be fatal. I know it would have been for my son. Does their daughter already go to a cf center? If so, you should contact them.
Sharon, mom of Sophia, 3.5 and Jack, 1.5 both with cf
Sharon, mom of Sophia, 3.5 and Jack, 1.5 both with cf
Mockingbird
New member
I'm sorry, but it kind of bugs me that amish people have a cf child and they're still amish. Granted, i don't know what the situation is exactly, so the child may be getting enough care, I don't know. It really would be nice to know how they go about the care for their CF child. Don't get me wrong, their environment may be healthier than what the rest of us are living in, but my concern is about the medical care. Do they go to a CF center? Do they have access to a doctor? Those things can be kind of important...
Jarod
22 w/cf
Jarod
22 w/cf
serendipity730
New member
Sylvia,
The mucus plug that you are refering to is actually meconeum illeus. Being a midwife, I am sure I don't have to tell you what meconeum is, but in babies with CF the meconeum is stickier and does not pass normally. As such, the bowel gets obstructed and often surgery is required. Has this Amish family had a level II ultrasound? Sometimes, meconeum illeus is seen as an echogenic bowel on the ultrasound. I think that it would probably be best for this family to have their baby delivered in a hospital. Meconeum illeus required immediate medical attention. Do you know if their first child with CF was delivered in a hospital? Did they have meconeum illeus? Please keep us up to date.
The mucus plug that you are refering to is actually meconeum illeus. Being a midwife, I am sure I don't have to tell you what meconeum is, but in babies with CF the meconeum is stickier and does not pass normally. As such, the bowel gets obstructed and often surgery is required. Has this Amish family had a level II ultrasound? Sometimes, meconeum illeus is seen as an echogenic bowel on the ultrasound. I think that it would probably be best for this family to have their baby delivered in a hospital. Meconeum illeus required immediate medical attention. Do you know if their first child with CF was delivered in a hospital? Did they have meconeum illeus? Please keep us up to date.
Yes, their daughter is seen in Cincinnati. She gets enzyme txs daily and has the vest which is powered by a generator.
What did they do for your son with the meconium illeus?
She will have the baby seen by the doctor soon after the birth. I am wondering what the signs are that a baby would have a meconium illeus. I will write to the cf center regarding this.
Thanks for your information.
~Sylvia
What did they do for your son with the meconium illeus?
She will have the baby seen by the doctor soon after the birth. I am wondering what the signs are that a baby would have a meconium illeus. I will write to the cf center regarding this.
Thanks for your information.
~Sylvia
Why would you assume that the Amish would not have medical care or love their children any less than you would. Better work on expanding your mind/heart.
The Amish are human...quite wonderful people , like you and I, who love and value family and their children.
They take quite good care and yes, attend cf centers, use vest therapies, etc.
The Amish are human...quite wonderful people , like you and I, who love and value family and their children.
They take quite good care and yes, attend cf centers, use vest therapies, etc.
Emily65Roses
New member
It's not as if we assumed (at least not me) that the Amish were heartless cold stupid people. Absolutely not. I have to admit, though, I was curious how well a CFer would do. Now that it's been explained, I know better.
Sylvia, as far as the meconium ileus. I personally had to have surgery when I was 2 days old to have my meconium removed because they couldn't get it out any other way. Surgery is not an uncommon solution with meconium ileus.
Sylvia, as far as the meconium ileus. I personally had to have surgery when I was 2 days old to have my meconium removed because they couldn't get it out any other way. Surgery is not an uncommon solution with meconium ileus.
Sorry , Emily. This is my first experience with a forum and I should have addressed each response to the specifice person I was responding to.
My comments in defending the Amish were to Jarod who was "bugged" that these parents would stay Amish after having a CF child.
But, thank you and all for your comments. They have been quite helpful and give me subjects to do more research on while helping this couple.
Thanks again,
Sylvia
My comments in defending the Amish were to Jarod who was "bugged" that these parents would stay Amish after having a CF child.
But, thank you and all for your comments. They have been quite helpful and give me subjects to do more research on while helping this couple.
Thanks again,
Sylvia
Emily65Roses
New member
No apologies needed. Just explaining myself. The Amish culture is certainly one most people don't know too well, myself included. When you hear a CFer is going to be Amish, an automatic response would be "oh man that kid is going to be screwed." But it makes perfect sense that they don't allow electricity EXCEPT in cases for medical reasons, etc. Good to know the kid will be okay. And whoever before mentioned the buggy rides was certainly right. Anytime a CFer rides in one of those, I imagine, it's even better than wearing the Vest. Haha. <img src="i/expressions/face-icon-small-wink.gif" border="0">