My son and I both have Complex Congenital Heart Disease. Anthony was born full term. After begging Doctors to pay attention something was wrong for six days,finally one Dr listened. Anthony was in full Congestive Heart failure,Kidney failure,liver and lung failure,his body had given up,but MOMMY NEVER GAVE UP,I MADE SOMEONE LISTEN.
He was immediately put into an isolation tank,we had to wait for the neo natal team from Milwaukee to arrive,and we went on our helicopter ride to the CHW.
I went numb….brain….heart….soul….I couldnt process what was supposed to be the happiest time in my life had turned into a nightmare. Dr.Berger walked upto me(had no clue who he was),he grabbed me and hugged me. He told me that this was a true example of a mothers instinct at its best. Despite 2 chest xrays at 1 and 2 days old,despite multiple calls and visits with M.D.s,P.H.D.s,no one could see what I could.
Dr went on to explain that Anthonys pulse Ox was 62 and falling,he would have gone to sleep with the Angels within hours had that ONE Dr not validated my feelings.
Anthony is complex with a combo of,TRANSPOSITION OF THE GREAT ARTERIES,VENTRICULAR SEPTAL DEFECT,PULMONARY ATRESIA,DOUBLE OUTLET RIGHT VENTRICLE,AND A PANTANT DUCTOUS ARTERIOSUS. After some repairs Anthonys heart is now non repairable and will one day require transplant. Anthony has taken part in many studies helping to successfully add to some now used procedures. I had to find a way to see how important it was to take part in these,afterall,some time ago there was another mother that made the same choice and those outcomes have helped my son.
Anthony is now turning 13. He is physically growing as any normal boy(scares me daily). He has no cognitive delays,only some impulse control(mistaken for adhd at times)issues.
He remains very educated about his condition,and active in his preventitive and surgical care. Anthony wants to advocate for the Organ Donor Registry and asks everyone
He meets if they are a donor and if not why? Hes so persistent he has even pulled up the site,which is www.organdonor.gov,and allowed others to use his phone for the 45seconds it takes to register.
I dont pretend to know what the future holds. I dont dream of weddings and graduations,I used to and it sickened my heart and caused me to grieve over hopes of things that havent even came to be yet.
But today,today we are 12 1/2 and in 7th grade. Anthony is right now experiencing his first love,her name is Izzy. She says shes never met such an extraordinary boy,,she says he only ever wants to make her smile and laugh. With a great big teddy bear and chocolates he just had his very 1st true Valentine,even surprising her with an extra surprise afterschool,a bouquet of flowers for her AND her mother. As I seen her begin to cry and jump to hug Anthony,I turned as my tears came flooding out,,,here was a milestone,a memory,an experience I had dreamed and I was thanking God for. Thirteen is few short months away. As we grow his questions get harder to hear and answer,however honesty seems to prevail. Dont ever under estimate our warriors,they have more heart and will to push forward than a troop of soldiers in battle. Thank you Anthony for teaching Mommy what life is capable of…..
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