Support Massiah's Fight for Medical Justice

Blessings Everyone! My name is Massiah Garrett and I am seeking medical justice for myself and my mommy. I was born with multiple medical conditions: Heterotaxy Syndrome (some of my organs were formed on opposite sides), Coarctation of the Aorta (narrowing of heart arteries), Ventricular Septal Defect (small hole between the pumping chambers of my heart), Complete AV Canal Defect (blood circulation problem), and Pulmonary Hypertension (too much blood flow to my lungs). To everyone's surprise, when I came out of my mom's tummy by C-section, I was stable enough to where I only needed 2 surgeries which took place when I was 3 weeks old: a Coarctation repair and a Pulmonary Artery band for my Pulmonary Hypertension. My mother and I were so relieved that I did not need any other major surgeries at this time and I could go home, recover, and continue to get big and strong. My awesome heart doctor said we would not have to operate on my Complete AV Canal Defect because I did not have any symptoms and my VSD closed on its own! (My body was trying to heal itself.) My mother and I were so relieved. So, I was able to go home at 2 months old for the first time and meet my older brothers. Unfortunately, while I had my Coarctation repair, the surgeons paralyzed my left vocal cord (which my mom diagnosed before the doctors did and had to fight for a week just for me to have a test to confirm it), so I had to go home with a nasogastric feeding tube so I would not aspirate into my lungs. Thank God that was the only complication from the surgery and thank God my mommy discovered it. After my vocal cord healed on its own, my mommy worked tirelessly to get me drinking from a bottle and eating pureed foods, and I was doing so well. I was growing stronger and stronger each day, but at my 6-month routine heart ECHO, my heart doctor found the Pulmonary Artery band that I had placed at 3 weeks old was now too tight and causing pressure on the right ventricle of my heart and it needed to be removed. He also found that there was some scarring from the Coarctation repair that needed to be opened up a little bit, but no correction was needed for the Complete AV Canal. My mommy and I were saddened to hear these results, but we were told that I would not have to get my chest cut open again and put on bypass. My heart doctor informed us that I could have a small catheter procedure that would take care of both conditions at the same time under regular anesthesia. Whew! That was a relief and a huge blessing! So, my mommy agreed for me to have the procedure so that I could continue on my growth and development journey. Again, at this time, my heart doctor stated that my main heart surgery did not need to be done because I was doing so well. Unfortunately, when I underwent the catheter procedure, they could not loosen the Pulmonary Artery band but were able to open the Coarctation scarring up. I recovered with no complications from this procedure and went back home with my mommy and my brothers. My mom then received a call from the hospital that we needed to meet with the surgeon to discuss when I would get the Pulmonary Artery band off, but they would have to open my chest up and put me on bypass to do it, but it would only be a 2-hour procedure. At the surgical consult visit, everyone including my heart doctor, mommy, CT surgeon, and the CT surgeon assistant stated that I was too small and my anatomy was so complex that I only needed the band removed and nothing else done right now since I was doing so good. So my mommy only gave them consent/permission to take off the PA band ONLY! Now this is where my quality of life was taken away and my mommy's right and choice to make informed medical decisions for me were ripped away. My mommy took me in for my scheduled PA band removal which was supposed to only be 2 hours. Unfortunately, while I was in the operating room after the surgeons took the PA band off with no issues or emergencies, they decided to also do my Complete AV Canal repair, a Mitral Baffle, and reroute my entire circulation system in my body without my mommy's permission and without informing her of what they were doing. I was in surgery for 7 hours and nobody said a word to my mom until they were done. There were no updates from ANYONE! You could imagine what my mommy was going through during that span of 7 hours not hearing anything about her 7-month-old baby boy! When they came out to tell my mommy what they had done, she almost fainted in the waiting room. They told her I was gonna be ok, but that was so far from the truth! I was admitted to the CT-ICU for almost 3 months as I suffered heart and lung failure. The surgeons cut into my heart conduction system and sent me into 2nd degree heart block and repositioned one of my pulmonary arteries which made it difficult for me to get off of the ventilator because it was compressing my airway. Then the nightmare continued. The CT-ICU doctors ignored all of my red flag symptoms I was having and ignored what my mommy was trying to tell them about my signs and symptoms (Yes, they were ignoring my mommy who is well-versed in family and emergency medicine and knows me inside and out). I almost coded 3 times during my hospitalization and would have died had my mommy not been there to intervene each and every single time. To make matters even worse, my formula my mommy was bringing into the hospital was being stolen from the dietary department, nurses were lying and saying I had symptoms I did not have to cover their wrongdoings (a nurse lied and said I was not tolerating my feeds and that I was throwing up, but yet she did not connect my feeding tube properly so my formula leaked out twice!), they were reporting false results during rounds (my mommy was at each and every single one) which led to me having multiple respiratory infections that were late being treated (while I'm having respiratory distress on the ventilator), and my mommy had hospital security called on her when a nurse refused to give me oxygen on the ventilator during a CPAP trial when I could not breathe, and the hospital denied having a specialist that could help get me off the ventilator faster until my mom had to stand firm that they were not going to put a tracheostomy tube in my throat and a post-pyloric tube in my stomach. The nurses were not even changing my diaper or doing my daily weights (My mommy had to do it or ask for me to be weighed daily). My mommy had to continuously advocate for EVERY single thing for me: a blood transfusion when my hemoglobin was at 8!, increase my calorie intake because I was not gaining weight, diagnose that I had apnea after I was put on nasal cannula, have them give me the appropriate antibiotics for my infections, mix my formula bedside so that I could eat. My mom had to ask for every single test that I needed to help discover what I was struggling with and get out of there safely, in one piece, and most importantly alive! They were even trying to discharge me with apnea because they did not want to listen to my mommy when she informed them that she was not taking me home until I had an apnea screening test which when they finally did it (5 days after arguing that I did not need one) confirmed that I did have apnea and needed to go home with supplemental oxygen because I stopped breathing when I was sleeping. Had my mommy just given in, doubted herself, and/or listened to the CT-ICU doctors, I would have died in my sleep at home. My mommy and I have been forever traumatized from this experience at this "Top-rated" hospital and I now have life-long lasting effects. I recently had to have a pacemaker placed due to the second-degree heart failure they caused, I'm afraid of swallowing because of all the trauma they caused to my throat so I stopped eating and drinking by mouth (I still have my NG tube), I am still oxygen dependent, I'm developmentally delayed due to the extensive time I was on bypass, and I suffer from childhood medical PTSD which all could have been avoided. The surgeons knew I was too young and my anatomy was so complex and they should have waited. My mommy also received several consults from other experienced CT surgeons who also said the same thing as long as I was stable, WE WOULD WAIT! The surgeons violated me, violated my mommy, and took away her rights as a parent to make sound medical decisions for me then did not want to listen to her when she was right about EVERYTHING. After all, nobody knows me better than my mommy who is also a medical provider with over 15 years of medical experience, skills, and knowledge.

My mommy and I are now on a mission to get legal justice for me and the countless number of other children, parents, and families who have suffered similar fates or worse (I was lucky ONLY because my mom is in the medical field) with our medical system. Our barrier is that for the past 2 years my mom has had to stop working her regular job to care for me and make sure I attend the 10-15 appointments/therapies I have monthly to ensure that I can recover to my fullest potential and plan for ongoing surgeries. We have had extensive medical bills not covered by insurance and I have two other siblings ages 4 and 9, so it has been an emotional, mental, and financial strain for my mommy. In order to secure legal backing, we have to pay attorney's fees for my case upfront and that is the reason we are humbly looking to get financial support in our fight against the medical negligence and medical malpractice that we experienced. We kindly and graciously ask if you can support us with whatever you can! We want to take a stand not only for myself but for every child, parent, and family that has or is suffering similar situations as this is not ok and those responsible need to be held accountable and "Do No Harm to those that they have Vowed to Heal." Thank you! Blessings to Everyone!

Note: The picture above is when they brought me to the ICU floor after the 8 hour procedure and the first time my mommy was able to see what they had done to me. I was unable to open my eyes for 2 days!