Isaac and VACTERL (the Secret Life and Struggles)

Isaac St Laurent has had more than 40 surgeries. He is now 21 years-old. Isaac was born at 1 lb, with V.A.C.T.E.R.L. We brought him home 2 months later, weighing in at 4 lbs. This is him, below, some time later.39009122_1557080699461201_r.jpegV.A.T.E.R./ V.A.C.T.E.R.L.
VATER association is a grouping of complex anomalies which is comprised of congenital abnormalities of many systems. At least 3 or more of these following anomalies must be present for a child to be diagnosed as having VATER association. Isaac has all of these and more below.

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Vertebral defect i.e., hemi-vertebra, sacral agenesis.
Isaac has an extra vertebra in his neck and seven hemi-vertebra (half formed) in his upper back. He also developed some extra fluid in his spinal cord that we are tracking. (this ended up being a "Tethered Chord" and required a surgery) which if not treated right away, could have left him paralyzed.  Tethered chord can also return over time. The Spinal Chord attaches some place in the column and begins to stretch and can be permanently damaged. This is something that needs to be tracked throughout his life. 
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Anorectal malformation or imperforate anus. Isaac had no anal opening when he was born. Dr. Morgan actually created one, through a series of surgeries. Isaac had a colostomy bag until we could establish the opening Dr. Morgan created. (no pictures here) The results are that Isaac has very little, if no bowel control. Hence an Oder issue has plagued him all through school. He is careful about what he eats and when, but has to wear pull-ups and no matter what he does, can be rough to be around for some people. 

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Tracheoesophageal fistula. AND Esophageal atresia: with or without TE (tracheoesophageal) fistula. Isaac had no esophagus. Basically his throat went to his lungs and his lungs to his stomach. (Roughly) Isaac had no Esophagus and they had to create one. He has had many procedures to repair and maintain this. It was also the cause of his open heart surgery. (see cardiac anomalies below)

Renal anomalies. Some children are born with one kidney or other renal deformities. Isaac had a lower intestine connection to his renal system. This was repaired early on, but testing and tracking renal issues is an important treatment strategy with VACTERL. Some of these kids develop Kidney issues later in life, that were not evident early on.

39009122_1557081963224375_r.jpegRadial dysplasia or aplasia. Isaac is missing his left radial. (One of the bones in his forearm.) This was also an extremely short arm. Dr Dell in Gainesville Florida (Shands Hospital) grew this one bone, an additional 3 1/2 inches. This was a painful process of cranking this apparatus several times, during the day, over a period of time. I think the cleanings hurt him more though. 

In 1973, the scope of VATER association expanded to be VACTERL association with the associated defects listed below :

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Cardiac anomalies. Isaac's complete cardiac system is on the opposite side. He had to have emergency Open Heart surgery, before they would open up his spine to repair the "tethered chord" The surgery was done at Emory University and Isaac should be seeing a cardiac specialist every year. He has not been in years. These are expensive tests. Complications can develop for VATER patients in their 20's and he needs to continue to track this. 

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Limb defects i.e., Talipes. Isaac had a floating thumb and has a missing thumb. Dr. Paul Dell, in a series of surgeries, at Shands in Gainesville, gave Isaac a thumb on his right hand by turning the index finger in and making it an opposing finger. He also created an opposing finger on Isaac's left hand. This left hand doesn't have the radial bone support, that the right does. There is also a lack of muscle structure there, but Isaac finds ways to use it. 

Many complications have cropped up, in the last 21 years and more are expected. 
39009122_1557082811789514_r.jpegIsaac knows we are trying to raise funds for him, but he doesn't want to see this, nor does he want to discuss it. You can mention that you saw the site, but please do not try to "fix" him or give him advice. He deals with his life in a private way, and this will embarrass him.

We have no other choice right now. We love Isaac and want to keep him around. Some of the issues he has (like seven hemi-vertebrata ) can cause much more serious problems, pain related and more. Seven of his Vertebra are 1/2 normal and 1/2 cartilage. We think that this is causing much of the pain he is experiencing right now, but can't take him to an orthopedist to find out.  
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He has no insurance and has an attorney who is representing him on a disability claim. The Government keeps saying "no" and there is soon to be a hearing (final hearing) to adjudicate his ability to claim disability (basically healthcare).

39009122_155708287959822_r.jpegIsaac has been using the emergency room for treatment of a complicated set of healthcare issues. The ER staff try to help, but it is Triage treatment only. 

The attorney told him that he needs to see the specialists to build a case for her. ER reports will not help. The Government appointed physicians will not help. They are paid by the Government.

39009122_1557082942405632_r.jpegHe owes the Hospital thousands of dollars now. He owes doctors money. 

All we are asking now, is for help for him to be able to pay the specialists for the testing needed, to show what is invisible to the court appointed physicians. 
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We set up a special account with USAA dedicated to paying the necessary Doctors and minor expenses involved with treatment and transportation. (It costs over $100 for Pull-Ups every month).
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Help us to help Isaac. If he can get the healthcare he needs, he could be with us a long time! We need to stay ahead of a potentially dangerous syndrome. This is something that there IS A CURE for, but we can't afford the treatment. The specialists could assist Isaac's attorney to build a case for the hearing. (I do not know when the hearing is but when we find out, the clock will be ticking)
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Organizer 

Fred St Laurent 
Organizer
Suwanee, GA
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