Bashing Boundaries Together

October 11, 2010, two baby boys were born at Atlanta Medical Center.

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Three hours apart, to same midwife and pediatrician. Both mothers were healthy and had normal pregnancies with no indication of abnormality. But their two babies were both born with a rare condition called Arthrogryposis, a congenital disorder characterized by multiple joint contractures, muscle weakness, and fibrosis.  There are 400 possible types of this disorder and any part of the body can be affected. One baby's limbs were affected while the other was born with a severe contracture of the spine, curving his body into a "C" shape, leaving him unable to eat or breathe. This second baby was rushed to the ICU and hooked up to a breathing machine and feeding tube through his nose. Shortly thereafter, he was medevaced to Scottish Rite Hospital where he stayed for the first several weeks of his life.



Meanwhile, the first baby was stable. He was able to latch and nurse, and his breathing was normal, yet his arms and hands looked paralyzed, he had no discernible elbows, and his toes were at his ears due to severe stiffness in his hips. After three days, he was discharged to go home.  The midwife, Margaret Strickhouse, has delivered over 5,000 babies in her career and had never seen Arthrogryposis before that October morning when she delivered two affected babies in one day. This a very rare and unlikely story, as only 1 out of every 3,000 babies in America are born with this condition, 30% of which don't survive.

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Tragically, of the two babies born that day, one lived, and one did not.

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The baby who's spine was so severely affected simply could not sustain life, while the baby who's limbs were affected was blessed with a healthy heart, lungs, and organs.  

 

Bash is the baby that survived.  This is his story.

When Bash wad born, he was extremely stiff in his knees, wrists, elbows and shoulders. It was immediately apparent that he had had extremely limited movement during gestation, with limp, lifeless arms and hands, and very thin, stiff legs.  In the most common type of arthrogryposis, hands, wrists, elbows, shoulders, hips, feet and knees are affected. In the most severe types, nearly every joint is involved, including the jaw and back.  Frequently, the contractures are accompanied by muscle weakness, which further limits movement.  Bash was born with very weak and underdeveloped muscles in his shoulders and arms, particularly his biceps. Because he was born without the ability to bend his elbows, his biceps never had the opportunity to engage, fire, and grow as a result of flexion at the elbow.



All of Bash's therapists and doctors, are very encouraged, and note that he has a very mild case. Some say its the most mild they have ever seen. One can recover from this condition and become symptom free. This is the intention we hold clear.

When Bash was 10 days old we took him to an Osteopath, Dr Armond in Suwannee, GA, and after one treatment, he “grew” a neck and his breathing went from high chest breaths to healthy low belly breathing.  Encouraged, we continued the treatments and he started to grow what looked like elbows.  This was the beginning of Bash's healing journey.  Bash has received world class holistic treatment in our dedication to enabling his to bend his elbows and feed himself.  In addition to standard medical therapies such as physical and occupational therapy, Bash has received: Osteopathic care, Chiropractic, Massage, Acupuntcure, Cranio Sacral Therapy, Reiki, Quantum Clearing, and AlphaSonic Soundwave Therapy.



As a classic "million dollar baby," he qualifies for state programs such as Babies Can't Wait, which sends therapists to the house every week to supplement the therapies that insurance covers



Everyday Bash gets better and better.  

 

He gets around the house by scooting, making his own way, its amazing to see.  He has now met major mile markers in his development.  He has learned to stand, get his balance, and take a few steps.  He has a wonderful gate trainer that he gets around in very well, and loves to go fast in it.  He has built a great sense of confidence now that he can go and explore his world as he pleases.

 

 

On April 19, 2013 Bash had his first surgery.  

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He had both of his arm tendons extended.  This will give him the ability to move passively at first, then over time gain the strength, and hopefully build the bicep muscles to get active flexion so he can feed himself, touch his face, and become independent.  In surgery they were able to get full 120 degree range of motion which was the ideal outcome of the surgery.   Although there was a complication, which caused his right are to fracture, so now he also has recover form a broken arm.  The doctor said this happens often with AMC kids because the bones are unused and weak.

During this recovery time there are major limitations on the therapy we can do with the casts on.   His doctors have prescribed Occupational Therapy when he gets his casts off  in 2 - 4 weeks.  But we can do, in the mean time,  Cranio Sacral Therapy, even with the casts on.  This is a very specialized therapy and it is expensive, costing $130 per hour.  It's crucial that we raise the funds for this continued therapy, as it is the only way to keep the progress he has made while healing from the intense surgery. 

 

We have a long way to go before he is totally functional and independent, but with your continued support we can do it together!  With Cranio Sacral Therapy, PT and OT, we know Bash will overcome all of the challenges life has offered him.

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You can make a difference, 

give now to help support

Bash's road to recovery! 

 

 

Arthrogryposis, also known as arthrogryposis multiplex congenita (AMC), is a rare congenital disorder that is characterized by multiple joint contractures and can include muscle weakness and fibrosis.  It is a non-progressive disease.



Mainstream Treatment

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While there is no reversal of this condition, individual quality of life can be greatly improved. As each person will respond differently, and will have different needs, a combination of therapies is beneficial.

 

Physical therapy including stretching, strengthening, and mobility training are often provided to improve flexion and range of motion to increase mobility.

 

Occupational therapy (may also include casting, splinting of affected joints) can include training in ADL and fine motor skills as well as addressing psychosocial and emotional implications of living with a disability. Since there is a variety of mobility impairments, individually tailored orthopaedic correction is often beneficial.

 

Orthopedic surgery, which include osteotomy or external Ilizarov fixator, may be elected to correct severely affected joints and limbs and symptoms such as clubfoot, hernia repair and correction of unilateral hip dislocation, in cases where these surgeries improve quality of life. However, in most cases, the contractures would recur despite surgery. A surgery called Tendon Release is usually done to stretch out the tendons that are effected.