Daniel’s ABS Story

Our Son Daniel was born on 27.05.2010 with ABS which we were totally unaware of until he was born. My pregnancy was straight forward and Daniel was born two weeks early. Daniel has an older brother who was not affected by ABS.

All four of Daniels limbs were affected with the least being his left foot which has an extra bobble of skin attached to his second toe. The four fingers on his right hand are fused together although his thumb is fine. Daniel had deep Amniotic Band indentations on his left wrist and right ankle which were surgically removed when he was one month old. The band on Daniels’ ankle had attached his big toe to his shin causing Metatarsus Adductus which we have learnt is similar to clubfoot only Daniel’s forefoot is affected and not his ankle. This was treated when he was four months old at Liverpool’s Alder Hey Children’s Hospital using the Ponseti casting method (casting above the knee). His casts were changed weekly for seven weeks and he has since had to wear a corrective boot for twelve hours a day to avoid a relapse in the shape of his foot.

Since the surgery to remove the band indentations Daniel has experienced swelling in his hand and foot which is a condition called Lymphedema. This is treated by a form of massage called MLD (Manual Lymphatic Drainage) and pressure garments in the form of a sock and glove that are to be worn at all times besides when he has his bath and massages. These are extremely uncomfortable for Daniel and we do have to remove them at times when he is distressed. We have recently met with a Certified Lymphedema Therapist who has taught us the MLD technique which is to be done daily and we are to meet with Daniels’ Plastic
Surgeon next month to discuss the surgery to release his four fused fingers on his right hand.

ABS has not set Daniel back, he amazes us all the time. He is already crawling around after his big Bro and getting up to mischief. We will remain positive and raise Daniel to believe that he can do anything he wants to do in life. We know that we have a long road ahead and there will be more obstacles to overcome but we wouldn’t change him for the world. He has been through more in his 8 months of life than most experience in a life time. He is a blessing to us and we are so proud of him.

We have found that not many people have knowledge of ABS and this site has been a great help to us. If anybody would like to email me then please do so.