All of us have had a doctor or surgeon who will do and say anything to discredit new advances in science. Some doctors or surgeons tell their patient to never have surgery again...leading their patient to believe that if this doctor/surgeon can't help me, an adhesions sufferer, then no one else can either!! EVERY patient has the right to request a second opinion!!!!
Maybe doctors/surgeons will agree to perform surgery--but only if it's an emergency situation...like an emergency bowel obstruction is. Who will be performing that surgery in an emergency situation? Them? It was they, who couldn't help before...and now they're the answer when it's an emergency situation?????
Some surgeons will tell their adhesions patients there is no help for adhesion related disorder (ARD). If the patient (or the patients family) hears about a surgeon who is highly skilled in adhesiolysis procedures, then surgeons will tell them to not believe what they've heard. This kind of surgeon DOES NOT want to allow a second opinion!! Why? Because, heaven forbid, if someone would be able to help the patient (in this case, Dylan), maybe they will see what a mess was created from the patient's previous surgeries! This kind of surgeon would allow that child to die---versus securing a second opinion---just so he might save face!
When a trusted (for years maybe) medical provider tells the parents of the child that there is no help for ARD, the parents simply believe what they've been told; because they're under so much stress and so frightened that they don't have the strength to challenge their medical provider's words. When this happens......OPTIMISIM WILL FADE!!
When they're told to NOT allow a second opinion---so another surgeon can take an indepth look at this child---they don't want to make their medical provider angry; because he is their friend. They don't want to hurt his feelings. The parents have gone through so much--and their medical provider has given so much to their child; yet, if this were your child, would you allow this child to suffer when all that is being offered is a chance...a second opinion?
All it will take is for the family to say they want a second opinion!! By seeking a second opinion they will have the best surgeons in the world doing everything they can to give Dylan the best chance available today--a chance that might allow Dylan to experience life as an active three year old child. Without a second opinion, Dylan will not have that chance.
Many of us adhesion-sufferers have walked this very same path!! If we had listened to some of the doctors/surgeons we had sought help from, some of us would still be suffering!! Some of us would be dead!! In fact, many are dead simply because they did not stand up for what they really wanted--a second opinion. Dylan has a chance to live; but only if his parents accepts the offer of a second opinion!!
Dylan's parents do not know us--and many of us do not know each other; but what we all DO know is that with a second opinion there is a chance for Dylan to live!! There are special adhesion-prevention techniques that have the possibility to offer Dylan relief from his suffering. There are advancements in surgery for adhesions--and there ARE a few skilled surgeons in the world, who are skilled enough to offer the highest quality adhesiolysis procedures in the world today.
Do we sit back and not try to impress upon the parents of Dylan how important this second opinion is for Dylan? We know it means the difference beween life or death; so we must tell Jessica why her family must take matters into their own hands and they must request (if necessary, demand) that Dylan have this chance...with NO disrespect shown to any of the current doctors on Dylan's case.
Dylan's parents DO have the offer of a second opinion; but if they allow themselves to be talked out of it, then Dylan doesn't have a chance!! Don't do this to Dylan!! He deserves better!! We adhesion-sufferers know how devastating a surgery can be when performed by surgeons, who do not realize that there ARE surgical techniques that will minimize and in many cases prevent adhesions from forming in the first place. Now that SprayGel adhesion barrier is available, SprayGel is playing a big part in the success of surgery...ALL surgical procedures!!!
Not everyone will have the opportunity that Dylan has been offered now. If it didn't mean life or death (or a life of hell for this little tyke) our words would not be so harsh; but for Dylan it IS life or death!! Our words are meant to sink in as deeply as they possibly can into the hearts of Dylan's parents; because our words might just save Dylan from the pathetic life he is existing in now!
If Dylan's attending doctors/surgeons can help him, then why haven't they?? THREE MONTHS HAVE GONE BY......and Dylan's condition is not improving!! TPN feedings indicate that Dylan's condition is getting worse!!
We beg you parents to give your permission so that Dylan will be able to get that much-needed second opinion with Dr. Leahy and Dr. Harry Reich. How can a second opinion hurt little Dylan anymore than he has already been hurt?
It may be too late to help Dylan; but none the less, we have to take a positive approach and conitnue to do everything we have in our power to encourage Dylan's parents to insist on a second opinion for Dylan. We cannot write him off as gone yet!!! The human body is a pretty resilient machine--and wants to live; but Dylan is in very, very bad shape.
As ARD Patient Advocates we believe in miracles!! We have to or we could do nothing for anyone. Both of us are success stories because we did not simply have just any surgeon perform our adhesiolysis procedures, we chose to seek the surgical expertise of the best qualified surgeons in the world!! We urge Dylan's family to do the same!!!!
With what both of us know about Adhesion Related Disorder (ARD), we cannot sit back and say nothing...because we care! How could we stand before our Lord and say we didn't do everything to the best of our ability to help Dylan and his family. Anything or anyone can not be allowed to stand in our way!!
ADHESION-SUFFERERS: Please share your personal stories with Jessica and her family. Tell them how you had complete faith and trust in the advice doctors/surgeons gave you; and without realizing it...your surgeons did NOT use techniques that ARE known to minimize the formation of adhesions following a surgery. Not only that; but they were not very skilled nor were they very experienced in the performance of difficult, lengthy and very risky laparoscopic procedures.
Tell them what kind of results you got as a result of your surgeries!! People need to know the truth about adhesions!! TELL IT LIKE IT REALLY IS!!
In peace and friendship,
Beverly J. Doucette and Helen M. Dynda ARD Patient Advocates Founding Members of the International Adhesions Society