Baby Char­lie’s plight a test of com­pas­sion for us all

The Washington Times Weekly - - Commentary - By Mercedes Schlapp

Baby Char­lie Gard’s death sen­tence could be is­sued any day now fol­low­ing the hear­ing in Lon­don, his fate now in the hands of the English court. In case you haven’t been fol­low­ing the case, the 11-month-old Lon­don in­fant has a rare, fa­tal ge­netic dis­or­der and has been in the hospi­tal for most of his life. The Royal Court of Jus­tice will de­cide whether his par­ents have the right to re­move Char­lie from the hospi­tal and seek al­ter­na­tive treat­ments with doc­tors who say they are will­ing to help.

This ob­struc­tion by the courts and the hos­pi­tals sends a dis­turb­ing mes­sage to par­ents with sick chil­dren. Char­lie is be­ing treated like a crim­i­nal and not as an 11-month-old baby whose par­ents are hop­ing that he gets a chance — a chance to live. What is even more trou­bling is watch­ing the hospi­tal, which should be fo­cused on the pa­tient, ar­gue in court that Char­lie should be taken off the ven­ti­la­tor, more con­cerned with main­tain­ing its in­sti­tu­tional pre­rog­a­tives and not al­low­ing Char­lie to re­ceive cut­ting-edge ex­per­i­men­tal treat­ment.

Doc­tors, a hospi­tal, and a court thus have been mak­ing de­ci­sions con­trary to the par­ents’ de­sire to care for their child and seek help else­where. This case sets a dan­ger­ous prece­dent, one that is fun­da­men­tally anti-par­ent. This is one of those mo­ments where we need to chal­lenge our in­sti­tu­tions on the rights par­ents have in de­cid­ing the fu­ture of their chil­dren.

Char­lie’s par­ents have known the sor­row and pain of watch­ing their son suf­fer in the hospi­tal, but yet they refuse to give up hope. One Amer­i­can doc­tor is will­ing to take the chal­lenge and pro­vide a treat­ment for Char­lie. The doc­tor told the court there was be­tween a 10 and 50 per­cent chance that Char­lie’s con­di­tion could sig­nif­i­cantly im­prove, and fi­nally the courts are will­ing to lis­ten to the doc­tor.

The au­thor­i­ties ar­gue that Char­lie when he is on a ven­ti­la­tor and his doc­tors don’t think that there’s much they can real­is­ti­cally do. My re­sponse is that Char­lie’s life is worth it. His life mat­ters as much as yours or mine.

The Rev. Pat Ma­honey, a Chris­tian hu­man rights ac­tivist who is with Char­lie’s par­ents, ex­plained, “If the courts, judges and gov­ern­ment bu­reau­crats are al­lowed to usurp parental rights, the fab­ric of our so­ci­ety and cul­ture will un­ravel. This is one of the big­gest of ex­am­ples of in­sti­tu­tions strip­ping the rights of par­ents.”

Mag­gie, the daugh­ter of one of my clos­est friend, was born with a lifethreat­en­ing ge­netic dis­or­der. The doc­tors warned her par­ents that she might not sur­vive the birth. She was con­nected to all sorts of med­i­cal de­vices, in­clud­ing a feed­ing tube and tra­cheostomy tube. Mag­gie even went home with a ven­ti­la­tor.

The prog­no­sis was grim, but the de­ter­mi­na­tion of her par­ents kept Mag­gie alive. Her par­ents would take turns go­ing to the hospi­tal while rais­ing five chil­dren. It was ex­haust­ing, tough and chal­leng­ing, but my friend would say that Mag­gie is worth it. No doc­tor pre­dicted that she would ever eat or breathe on her own, but to­day Mag­gie, who is now three years old, has be­come more in­de­pen­dent. She is off the ven­ti­la­tor, the trach and feed­ing tube. Like Char­lie’s par­ents, Mag­gie’s par­ents never once gave up on their child.

I am blessed that my fam­ily is part of Mag­gie’s life. She brings great joy to our lives. She teaches my chil­dren about com­pas­sion, sac­ri­fice and pure love. She also teaches us that pain and sac­ri­fice are part of ev­ery hu­man life, and learn­ing how to deal with suf­fer­ing is part of the hu­man ex­pe­ri­ence.

As Dr. Jerome Le­Je­une, a French pe­di­a­tri­cian and ge­neti­cist who spe­cial­ized in chro­mo­some dis­or­ders, once noted, “The qual­ity of a civ­i­liza­tion can be mea­sured by the re­spect it has for its weak­est mem­bers.”

In­sti­tu­tions need to honor not only the par­ents’ wishes, but un­der­stand that they have a re­spon­si­bil­ity to pro­tect the weak. Even the weak­est among us have rights. Mercedes Schlapp is a Fox News con­trib­u­tor, co-founder of Cove Strate­gies and former White House di­rec­tor of spe­cialty me­dia un­der Pres­i­dent George W. Bush.

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