March 12, 2010


I just realized I have yet to address one of the biggest questions in regards to having a child with a limb difference...


Why did Gavin's left arm stop growing when the rest of his limbs continued to develop normally? How did this happen? Was it something I did? Something in our genes? Something that could have been prevented?

The truth is, we don't really know and probably never will. All the doctors can do is speculate.

I have been reassured several times that it was nothing I did or didn't do during pregnancy. I know firsthand that mothers can experience a great deal of guilt. I think that topic might require a separate post because I have a whole lot to say about that. But basically, don't waste your energy on guilt. Easier said than done, I know...

John & I agreed to complete some genetics testing to see if it had anything to do with something in our genes. The answer was no. It is not hereditary or genetic. We are at no greater risk than anyone else of having another child with a limb difference.

The doctors also ruled out Amniotic Band Syndrome (ABS). Amniotic band syndrome is when strands of the amniotic sac become separated and can become wrapped around various body parts. This constriction can cause a variety of problems depending on where strands are located and how tightly they are wrapped. During my pregnancy I had many MANY ultrasounds and since there were never any amniotic bands in sight, the doctors were sure that ABS was not the cause.

Here are some statistics about ABS:
Amniotic banding affects approximately 1 in 1,200 live births. It is also believed to be the cause of 178 in 10,000 miscarriages.
Up to 50% of cases have other congenital anomalies including cleft lip, cleft palate, and clubfoot deformity.
Hand and finger anomalies occur in up to 80%.

The best explanation we were given was by an orthaepedic surgeon at The Hospital for Sick Children in Toronto. He took one look at Gavin's arm and said that he sees this all the time and it is almost ALWAYS the left arm that is affected. The way he explained it (and I will say it very simply) is that it was most likely that a blood clot caused the circulation to be cut off in Gavin's arm which caused it to stop growing in utero.

I found it very interesting that it is usually the left arm that is affected. He explained it to us that the shortest, most direct route from the heart is to the left arm. So when a blood clot is formed it usually gets pushed through the easiest, fastest route (instead of around to the right arm or all the way down to the legs).

I think this must be true because of all the arm amputees we met at the CHAMP seminar, I think I can only remember one that had a right arm amputation. Most children were LBE (left below elbow) like Gavin.

When it comes down to it, it doesn't really matter what caused it. We can speculate and theorize all we want but what's done is done. There's no point in looking back. So lets look forward to all the wonderful things the future holds for these extra special kids! ;)

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