The baby has been diagnosd with Lymphedema at 23 week of pregnancy. Her father, grandfather and unce also have Lymphediema on her Father's side, but we do not know much about the condition or what to expect. We have been overwhelmed by info on the internet and by others. The Cardiologist has ruled her out for Turners syndrome, are there other things to look for?
If someone could guide us to what to expect. Her swelling so far is restricted to foot. I have some questions if you guys could help.
We have been told most likely she will have no toenails? Is there any chance under any circumstances that amputation is needed? Will she be able to play sports? Will she need special care at birth and infancy that we should prepare for? Will hse need special coaching to learn to walk? Is this painful for the baby?
Sorry to go n and on but there are so many quesions and we have been given ifnormation by father's side of the family hat turns out to be incorrect. We just want to eductae ourselves as much as possible.
prenatal diagnosis at 23 weeks
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prenatal diagnosis at 23 weeks
by marlenecs » Mon Mar 14, 2011 10:21 am
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Re: prenatal diagnosis at 23 weeks
by Cassie » Mon Mar 14, 2011 5:42 pm
Welcome, Marie!
Congratulations on your exciting coming event of welcoming your new daughter into the world! I'm thrilled for you and hope you'll enjoy every moment of anticipation and all that mothering involves!
That can be hard to do when you're facing so many unknowns that seem so threatening, so I just want to reassure you that you and your new wee one will be able to handle all this with grace and good spirits, but it means taking everything one step at a time. And you're doing great with step 1 --gathering the information you need. Now's a good time to find an experienced therapist who can help you prepare so you already feel comfortable and confident when your daughter makes her entry. The Therapist Locator here might be a good place to start. Try all four links and when you have a list of therapists in your area, start calling them and asking them about their experience with little ones. This will be a long-term relationship, so choose someone you're comfortable with and are able to ask questions freely:
http://www.mylymphedema.com/therapist.htm
There's a Yahoo group (another one of Pat O'Connor's groups) for parents of kids with lymphedema, and many there have babies and can help you find the resources you need, as well as support you with their shared experiences. It's here:
http://health.groups.yahoo.com/group/ch ... ssages?o=1
Just as a quick answer to some of your concerns, lymphedema is (as you know) a chronic condition, one your daughter will deal with all her life. With good care she'll be able to play sports or do anything else she cares to do. She is SO fortunate to have this already diagnosed, and you already setting up a welcome for her that includes the best of care right from the start! Amputation is NOT a treatment for lymphedema -- Complete Decongestive Therapy is. It involves a special, gentle directional massage called Manual Lymph Drainage (MLD) that brings down the swelling by moving it gently out of the congested area and back into circulation in the body. Compression (by layered bandaging or compression garments) helps to keep the fluid from re-accumulating. Exercise (as is sports!) is actually good for lymphedema, and is part of the treatment plan as well. The other part of treatment is careful skin care.
So -- nothing invasive, nothing painful. It is not easy to be consistent and compliant with the treatment all the time, but starting out new, as you will be, makes it possible to make excellent lymphedema care a part of your daughter's daily routine, so it can become as much a habit as brushing teeth.
A baby is one of life's most impressive miracles -- be sure to take the time to set aside worry and enjoy everything about this exciting journey! Wish I were close enough to give you a huge, happy hug of encouragement!
Keep us posted! Tell us how we can help. And again, my warmest congratulations!
Cassie
Congratulations on your exciting coming event of welcoming your new daughter into the world! I'm thrilled for you and hope you'll enjoy every moment of anticipation and all that mothering involves!
That can be hard to do when you're facing so many unknowns that seem so threatening, so I just want to reassure you that you and your new wee one will be able to handle all this with grace and good spirits, but it means taking everything one step at a time. And you're doing great with step 1 --gathering the information you need. Now's a good time to find an experienced therapist who can help you prepare so you already feel comfortable and confident when your daughter makes her entry. The Therapist Locator here might be a good place to start. Try all four links and when you have a list of therapists in your area, start calling them and asking them about their experience with little ones. This will be a long-term relationship, so choose someone you're comfortable with and are able to ask questions freely:
http://www.mylymphedema.com/therapist.htm
There's a Yahoo group (another one of Pat O'Connor's groups) for parents of kids with lymphedema, and many there have babies and can help you find the resources you need, as well as support you with their shared experiences. It's here:
http://health.groups.yahoo.com/group/ch ... ssages?o=1
Just as a quick answer to some of your concerns, lymphedema is (as you know) a chronic condition, one your daughter will deal with all her life. With good care she'll be able to play sports or do anything else she cares to do. She is SO fortunate to have this already diagnosed, and you already setting up a welcome for her that includes the best of care right from the start! Amputation is NOT a treatment for lymphedema -- Complete Decongestive Therapy is. It involves a special, gentle directional massage called Manual Lymph Drainage (MLD) that brings down the swelling by moving it gently out of the congested area and back into circulation in the body. Compression (by layered bandaging or compression garments) helps to keep the fluid from re-accumulating. Exercise (as is sports!) is actually good for lymphedema, and is part of the treatment plan as well. The other part of treatment is careful skin care.
So -- nothing invasive, nothing painful. It is not easy to be consistent and compliant with the treatment all the time, but starting out new, as you will be, makes it possible to make excellent lymphedema care a part of your daughter's daily routine, so it can become as much a habit as brushing teeth.
A baby is one of life's most impressive miracles -- be sure to take the time to set aside worry and enjoy everything about this exciting journey! Wish I were close enough to give you a huge, happy hug of encouragement!
Keep us posted! Tell us how we can help. And again, my warmest congratulations!
Cassie
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Re: prenatal diagnosis at 23 weeks
by marlenecs » Tue Mar 15, 2011 5:42 pm
Thank you so much for you rkind words, they are very comforting.
As for the therapist, the Pre-natal Pediatrician[s best freind is a therapist that specializes in Lymphedema.
Thanks again, I will chck out the other website.
As for the therapist, the Pre-natal Pediatrician[s best freind is a therapist that specializes in Lymphedema.
Thanks again, I will chck out the other website.
- marlenecs
- Posts: 2
- Joined: Sat Mar 12, 2011 9:08 pm
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