Possible prenatal ultrasound lymphedema diagnosis

[ewgoforth]

Hello,

My wife and I are expecting a baby boy. She is 19 weeks pregnant.

The Doctors noticed a few things in our last ultrasound. There is quite a bit of edema (swelling) in the arm, it starts around midway up the forearm and extends to the palm of the hand. The swollen arm is probably three times the diameter of the other arm.

There's clubbed feat which are consistent with amniotic band syndrome.

At first they thought it might be an amniotic band, but they're not seeing any evidence of the band other than the swelling itself. The doctors are willing to try fetascope surgery to release the band, if they can see it, but there are too many possible risks to try it otherwise.

Then there's this mysterious blob floating around that seems to be possibly tethered to the umbilical cord. They've never seen anything like that.

Another possibile diagnoses for the arm are Primary Lymphedema (Milroy's Syndrome) or an overgrowth syndrome like Klipper Trenaunay.

We've been told that both Klipper Trenaunay and Lymphedema typically affect the entire arm and Klipper Trenaunay much more commonly affects the leg than the arm. Has anyone seen Klipper Trenaunay or primary lymphedema (Milroy's Syndrome) in the early stages affecting only part of an arm?

Has anyone seen anything like this floating blob on the ultrasound with any of these conditions? It looks sort of like a plastic grocery bag floating in a swimming pool.

-Eric

[patoco]

Hey Eric and Jill

Super welcome to our family here.

I hope you were able to read Shary's note to you in our Children's group. The only correction in her note I would make is that Milroy's, which is Hereditary Lymphedema Type 1 can also involve the arms.

As strange as it might sound, I have heard of situations where the lymphedema affected only part of a limb; even effected a shoulder while not affecting the arm. A lot of how lymphedema manifests itself depends on the type and severity of the lymphatic damage.

Primary lymphedema is caused any time there is a malformation in development of the lymphatic system.

There are many types of malformations possible as well. For some people, the lymph system is too dilated and looses its ability to properly move fluid.

In others, the lymph channels and vessels are too restricted, which results in the same inability of lymphatic movement.

In some, like myself, we were born missing significant groups of lymph nodes in various areas of our body. For example, I was born without some of the critical nodes in the inguinal areas.

There are incidentally, some 30 other syndromes that will present with lymphedema as a complication.

You can find info in two areas.

On our page "articles"

http://www.lymphedemapeople.com/articles.htm

scroll down to the section "Hereditary Conditions" and below that "Related Medical Condtions" you'll find many of them listed.

Keep scrolling down until you reach the section called "Syndrome of Lymphatic Dysplasia" We have full info pages on a couple dozen more syndromes. All pages have recently been updated with current information.

The floating bad really baffles me. I can't imagine what that might be, except for the possiblity that it is a duplicate amniotic sack. I don't know if that is a possibility or not.

I'm very gald that you found both our site here and our children's group.

You'll find the children's group is simply incredible with not only the information parent share with each other, but the compassion and outreach as well.

My absolute best to all three of you.

Pat