Amniotic Banding and Limb Loss

By Jennifer Sullivan

Before I begin, I must tell you that I’m not a doctor, the last science class I took was biology in my freshman year of high school, and I’m not familiar with most medical vocabulary. I can only tell you about my experience with amniotic banding and baby Sabina, and define banding as best I can given the information provided me by our pediatrician, geneticist and orthopedist.

Sometimes when the amniotic sac is forming, threads of amnion are also formed. Most of the time these threads are harmless, floating around the baby and not harming it in any way. We don’t know how often these threads form, but about once in every 7,000 to 10,000 births, a thread of amnion wraps around a developing limb. We don’t know why this happens, and we don’t know what causes these threads (or bands) to form in the first place. According to current wisdom, they are not created as a result of something the pregnant woman does or does not do, and the tendency to form them is not genetic.

As the limb grows, the thread tightens, until it is eventually severed. In some cases, the limb is not severed before birth, but is rendered useless and must be amputated after birth. And sometimes, the limb is spared and the baby is born with what looks like a mark around the limb caused by an elastic band. It all depends on when the band forms, how the baby moves, and how much the band tightens.

In Sabina’s case, the geneticist feels the amputation probably took place between 7 and 10 weeks LMP. The hand and forearm were then reabsorbed. It is assumed that in cases of a clean amputation, the accident occurs early on.

According to our orthopedist, more girls are born with amputations from amniotic banding than boys. The reason for this is unknown. The left side of the body is affected more often than the right: reason unknown. It’s more often an arm than a leg: reason unknown. And finally, the amputation is almost always below the elbow. Again, reason unknown!

As you can see, there’s a lot we don’t know about amniotic banding! And a lot of what we do know is purely theoretical. As I stated above, limb loss as a result of amniotic banding is very rare. Limb loss is more often one symptom of a larger problem, often genetic. Limb loss from genetic or teratogenic causes is most often bilateral, i.e., if you see a child who is missing both arms or both legs, amniotic banding is most likely not the cause.

SOME PERSONAL EXPERIENCE: When Sabina began to learn to roll over, reach for objects, and crawl, I kept waiting for her to appear frustrated by not having a left hand. This never happened. She has learned to do all of these things in a timely fashion, and appears to have no idea that she’s supposed to have a left hand. The body is an amazing thing and Sabina at 7 months already understands what arm does what. The orthopedist has assured us that she will have no “phantom limb” sensation. Her right hand, according to her pediatrician, is much more agile and coordinated than that of a two-armed baby in her age group, and he also suspects she will have very nimble toes! I can also attest to the dexterity of Little Arm. She is able to pick things up using the elbow joint. The stump is very strong and she can support the weight of her upper body on it while reaching for things with her right hand. She is very fussy about her right hand being free at all times. While she is a huggy baby, she does not like having her hand held even for a second. When she nurses, I must always hold her in a position where her right hand is free. She has shown this preference since birth. Those who are baseball fans, and more specifically White Sox fans, are no doubt familiar with Jim Abbott, the one-handed pitcher. I have read that when he was growing up, his parents urged him to play soccer, but he had other plans. Our philosophy is not to assume Beans will have any limitations at all, and most likely her biggest frustration will be with people who assume she cannot do things.

THE PROSTHESIS DEBATE: Many parents of children with congenital amputations choose to fit their child with a prosthesis. Our orthopedist was very insistent that we do so for Sabina, preferably at around 6 months of age. We have chosen not to go this route. If she requests one when she is older, we will of course get her one. In truth, I doubt this will happen. We feel that this type of early intervention will only teach her that she isn’t fine the way she is. This is clearly a very personal issue. I made a lot of phone calls to orthopedic clinics after Sabina was born, and learned that in the cases of congenital amputation of an arm or hand, (the leg is a different matter) the child abandons the prosthesis over 50% of the time, no matter how early she gets it. Of those who do continue to use it, it is often reserved for very specific tasks. I’m not trying to say that getting a prosthesis is wrong, or even that not getting one is the right thing to do. I include this information mostly to let you know that getting a prosthesis is an option. Limb loss is a main concern of the Shriners organization, and Shriners hospital will always pay for prosthetics should your health plan refuse to do so. Our geneticist and orthopedist assured us that being referred to a Shriners Hospital is a very simple matter.

WHAT TO DO, WHAT TO SAY: Should you encounter a child who is missing a limb (whether as a result of banding or not), remember that a missing limb is not necessarily indicative of illness or cognitive delay. Do not offer to help the child before he/she has asked for it, and do not assume there is anything this child cannot do. Do not offer your condolences to the parents of such a child. If you have a friend who gives birth to a baby with a missing limb, and you don’t know what to say, I offer this suggestion: congratulations on the birth of your baby! I cannot stress this enough. Parents of children with disabilities, whether they are physical or cognitive, deserve to hear these words just as much as parents of “normal” children.

SOME PERSONAL THOUGHTS: If you see a child who has a disability you are not familiar with, and you are curious, I feel it’s appropriate to ask the parent about it. Do not ask, “Did you take drugs when you were pregnant?” and unless this person is a very close friend, do not ask “Would you have aborted if you had known about her condition in advance?”

SOME EVEN MORE PERSONAL THOUGHTS: When I was growing up, I was taught not to stare at someone who had a visible disability. Little did I know that pretending not to see these people is the most hurtful thing one can do. I cannot tell you how painful it is to sit in a roomful of people who are all pretending they don’t see my beautiful baby girl. I’m not saying you should gawk or encourage your children to do so. But there is nothing wrong with making eye contact, and giving a smile. I also feel that if your child wants to approach the parent and ask about the disability, that’s okay. Don’t forbid your child to approach that woman with her baby because you’re afraid your child will phrase his question poorly. I’d rather a person asked a prying question than simply pretend we don’t exist. Again, this is just MHO. Others may feel differently.

If you have any questions, please feel free to ask me. Also, if you have any information I didn’t include, I’d be very interested in hearing it.