Amniotic Band Syndrome? Heard of it? Seen it?

[HappyNurse2005]

Had a baby delivered today with known club feet. Was also found to be missing 3 fingers on one hand-that was not known until delivery. MD said it was likely amniotic band syndrome. Had never heard of it. When I went home, i looked it up and turns out they can be related.

Just my interesting info for the day.

[eden]

I've seen it once. It involved some missing fingers, there were also other problems with the baby's arms. It looked like the fingers had been perfectly amputated.

[rph3664]

my friend who is pregnant, had an ultrasound and was found out that the baby has no left hand due to amniotic band syndrome. she and her husband

were in denial stage at first but right now they are looking forward to see their bundle of joy soon.:wink2:

I know a family whose son was born with one arm missing below the elbow. He's about 30 years old now and he is 100% normal; his family does not consider him handicapped and he doesn't either.

They took him to Shriner's Hospital when he was young and fitted him with a prosthesis but he only uses it in situations where the rest of us might need a third hand.

Your friend probably has NOTHING to worry about. Sure, the child will have challenges but who among us doesn't?

p.s. A few years ago, there was a woman in the Miss America competition who was missing a hand. She was from my area, so that's why I heard about her. She was also a champion baton twirler, and this included knives and flaming batons. Her name was Christa Uchytil; you might tell your friends about her.

2nd edit: Christa Uchytil is the infertile woman whose mother carried her twins for her. The Miss America competitor is Theresa Uchytil.

Oops.

[33-weeker]

Seen it a few times - both amputations and strictures. One was a right arm BEA of the son of a tennis pro. Once had a preemie with a strange stricture completely around her waist below the level of the umbilicus, just above the pelvis. All we could guess was that it was a band.

Babies who swallow pieces of it or get it on their faces during development can look like something from a horror film.

It's kind of ironic that something intended to protect the fetus is also capable of doing such harm to it.

[crissrn27, RN]

I have seen bands a few times. Actually, more than some of you guys have seen them, that have been doing this a lot longer than me! Wonder if it is something in the water around here? I have seen fingers, toes, a left hand, a right foot amputated. I have seen two trunk bands, with scar tissue, but the babies did OK. I have seen one cord band, in a 25 week demise. Also had a baby with strange swollen feet, and still had the bands attached, so we guessed that caused the swelling. Thank goodness it didn't amputate in that case, b/c it affected both feet.

We also have lots of polydactyly, and syndactyly. At a guess, I would say 1 out of every 30 has some form of this at my last hospital. Haven't been at the new long enough to say. Now that I have heard you guys numbers, I am worried about the birth defect rate around here!

[rph3664]

Crissrn, do you live in an area with a lot of cousin marriages and inbreeding? Are there a lot of Amish or Mennonites, who also tend to marry relatives and have a high rate of birth defects?

Just curious.

[33-weeker]

My midwife told me she had a client that always ate a high-protein diet during her pregnancies. All 3 of her babies were born 'in the caul' (in their bag). Not sure if this is an ideal outcome, though it is considered good luck. LOL

This is just one case, but could diet have an effect on the strength of the bag?

[crissrn27, RN]

Crissrn, do you live in an area with a lot of cousin marriages and inbreeding? Are there a lot of Amish or Mennonites, who also tend to marry relatives and have a high rate of birth defects?

Just curious.

I don't know that our rates are any higher than other areas. Never really looked into this. Few Mennonites around this area, never had an Amish pt. The only pt that admitted she was married to her first cousin that I have had, the baby was fine.

[June55Baby]

Amniotic Band Syndrome? Heard of it? Seen it? Yep! I live with it every day!

I was born with ABS. This was in 1955 in a tiny clinic in the deep South to very young (teenage) parents. I had / have syndactyly (webbing) and amputations of both fingers and toes with extensive deformity of my right fingers and toes on both feet.

My parents (God love 'em) NEVER made me feel handicapped... just special. "That's how God made you. Just like He gave you pretty blue eyes, He gave you deformed fingers." Yep! they actually used the word deformed and I didn't / don't see that as a bad word.

My very young parents took the advise of our dear family doctor in this small town and took me to the "big city medical center" for evaluation. I had surgery in the big city hospital about every 3 months from the time I was 3 months old until I was 15 years old. The wonderful care I received from nurses both students and graduates inspired me to become a nurse.

I play the piano, type, quilt, do anything I have a mind to. Most of the time when I see a picture that includes my hands / feet, I am suprised at how they look because I don't see my deformity. And because I don't see it (wasn't taught to see it) others don't seem to either. My husband told me just the other day, "I don't even see your deformity, I just see you." (AWWWWWW)

I have had the opportunity to talk with and encourage parents of children with ABS or similar conditions. I believe having ABS has made me a better nurse and a better person.

[crissrn27, RN]

Thank you so much for sharing your life experience with us, June55baby! It is great to talk to people, esp. nurses, that have experienced things that we see, and worry about, everyday.

Your families use of the word "deformity" reminds me of my families use of the word "retarded" . My brother has brain damage from an untreated GBS infection that he had when he was a newborn. It left him mildly mentally retarded. Every time I tell someone this, I get a strange look, like I am calling my db a bad name. Why do people use words like this to hurt people, turning the words in to "bad" words?

Thanks again for sharing, and a special thanks for the work you do with people with your condition! I know it means a lot to those families, to see that people that have lead normal, happy lives with ABS. It sounds like you are a great nurse.

[June55Baby]

Thanks for your comment Criss.

About the word "deformed", doesn't it exactly describe my extremities? According to my medical dictionary, it means- misshapen, distorted, malformed, distorted. And I'm not ashamed of that.

It's ignorance and misuse that have made words like that "bad".

God bless you and your brother...

[Elvish, BSN, DNP, RN, NP]

This has turned into quite an interesting thread!