dn1

 

I was born on the 27th May 2010 by emergency caesarean with a very rare condition called Amniotic Band Syndrome (ABS). The exact cause is unknown but it is believed that ABS is caused when the inner membrane (amnion) ruptures or tears, without injury to the outer membrane. The developing fetus is then exposed to the floating tissue (bands) from the ruptured amnion whilst floating in the fluid of the womb and the bands entangle around parts of the growing fetus which can cause a number of complications. Each case of ABS is unique and affects people in different ways.

In my case it affected three of my limbs;


A band attached itself to my left wrist causing a very deep band indentation in my arm which had to be surgically removed when I was one month old to prevent it restricting the circulation to my hand.


Another band attached itself to my right hand causing syndactyly (four of my fingers were fused together) although luckily my thumb was fine. I underwent surgery in June 2012 when my Plastic Surgeon managed to release my two outer fingers from my middle two although they did have to amputate before the first knuckle of the fingers. My two middle fingers were then released in August 2014 so I now have four separate fingers that I can wiggle all about.


Children do ask now and again about my fingers and I tell them very matter of fact that “my hand got stuck when I was in Mummy’s belly and didn’t grow properly, but the doctor made it better”.


Complications


I do get aches in my hand at times and it often turns a blue/purple colour especially in the cold, this is due to the nerves/circulation being affected during surgery.

 

Care

  • Mummy rubs my hand and it soon returns to its natural colour and she makes me wear my gloves in really cold weather.
  • Mummy needs to moisturise/massage my hand morning and night to help reduce the appearance of the scars and to help with the circulation.

 

A band attached the toes of my right foot to my shin causing a condition called Metatarsus Adductus, this band was also released surgically when I was one month old. My foot curled in quite significantly due to this and although I was casted twice, the first time at four months old for two months then again at seven months old for six weeks the foot relapsed again and started to curl into its original position. My Orthopeadic Doctor performed surgery in October 2013 to straighten my foot but there were complications which led to me needing a skin graft from my thigh and me having to go to theatre many times over several weeks. Once the skin graft had healed and I was back on my feet some several months later I was given a splint which I must wear daily and boots and bar which I wear at night and will do so until I am at least five.

 

dn2

 

Complications


I get aches and pains at times as I walk on the outer foot rather than the flat of it which makes it hard to walk long distances without it getting sore.
At times I do lose my balance and I may need a little help when walking up or down steps/stairs.

Lymphoedema


I was diagnosed with a condition called Lymphoedema when I was a couple of months old in my left arm/hand and my right leg/foot. We were told that this was either due to the amniotic bands or the surgery to remove the bandings affecting my lymphatic system. This means that my hand and foot swell (like water retention) due to my body not being able to get rid of the waste like it should. Some days it is worse than others and I sometimes get aches and pains.


Care


I am measured every couple of months for pressure garments in the form of a sock and a glove that I must wear daily. I don’t really like wearing them and I struggle with Mummy when she puts them on. They help to reduce the swelling and to protect my skin from cuts, scratches, insect bites and sunburn.

Manual Lymphatic Drainage (MLD) – This massage technique helps to reduce the swelling and also helps to ease the aches.

Exercise is very beneficial too so I enjoy taking part in all physical activities.

November 2014


ABS has not set Daniel back, he amazes us all the time. Only at his most recent Parents evening we were told that Daniel is the dare devil of the class, the one who climbs the highest, he’s just a typical cheeky little boy. He took his first steps at 14 months old despite us being told that he may lose his right foot due to the band being so tight and if not then he would walk much later than other children his age! He still has a lot to go through but it doesn’t phase him, he is so determined and with our encouragement he knows that he can do absolutely anything in life. Daniel has been through so much yet has gone from strength to strength, he is a blessing to us and we are so proud of him.