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“I even coached T-Ball, with Anthony on my chest in a Snuggly carrier.”
Raymond Anthony Papalia, II, Trisomy 18, 03/22/1989 – 08/26/1989, McAlester, OK, USA
Anthony was our third child, he was very active and very strong in during the pregnancy, no problems were detected until birth. He was born at Moncrief Community Hospital, in South Carolina. It was a nightmare, the Doctor decided to do a C-Section but that was only because of a prior C-section. Anthony was not breathing well at birth, and some of the birth defects were visible. They tore up his umbilical cord area trying to insert an IV line, but they found that the Artery or Vein that they were trying to access was NOT PRESENT. Every effort was made to keep Anthony from slipping away, but MACH did not have a NIC Unit and they were not prepared to handle the situation so they transferred him to Richland Memorial Children’s Hospital in Columbia, SC.
A team of geneticists was called in, tests were done, Anthony was kept in the NIC unit in an Incubator but did not need life support, he was breathing on his own but suffered frequent seizures and he was dehydrating rapidly, even with the IV fluids. The more they tried to help him, the faster he declined. The tests came back and the geneticists met with us to tell us his prognosis was worse than grim… His father and I were informed as gently as one can be that our son was living on borrowed time and there was nothing to be done about it. They said he had a large hole in his heart, irregular chambers, small lungs, visible skeletal anomalies,other missing and/ or poorly formed organs, extra digits and severe retardation. The list just went on and on it seemed. The doctors said that they didn’t expect him to live as long as he had already considering all the complications and their inability to repair the problems. Anthony obviously had a strong will to live because after I requested that any and all life support measures be ceased and allow comfort measures and drugs only, he began to gain weight and pink up and just generally started looking healthier. RMC informed us that since he was basically already deceased….and that they could not keep him in their hospital and that we needed to arrange for him to be moved to another care facility. They would not let me take him home due to some weight restraints or what ever rules at the time. He was transferred back to Moncrief Community Hospital around April 5th, 1989 and he lived there in his little ‘box’ until he finally gained the extra couple of ounces needed to be released on May 20th, 1989. During the time he was an inpatient, the staff decorated his room, put some furniture and a rocking chair in there for me and made the room a home away from home for me and his brother and sister. We were kind of living in limbo and it was very stressful, I could not handle my children being under separate roofs. The staff educated me on how to care for Anthony, basically, I received the short course in neonatal nursing…. I learned how to insert his feeding tube and change it every 48 hours, seizure management, baby enema’s ( his bowels did not function properly) whatever I needed, they taught me…… The hospital staff was so supportive and made every effort to learn what ever they could about Edwards Syndrome, but at that time, the internet was not a reality, so research was slow and hard to come by. One of the nurses came across some information from SOFT and contacted them, and in turn, SOFT made contact with me and gave me the option to respond at my own leisure. I was so very thankful to hear that someone else had some idea of how my world was falling apart. Those conversations on the telephone were my lifeline, I felt so alone, but knowing that there were others in the same boat really helped me. At that time, it was unheard of for a male child with full T-18 to actually survive birth, let alone live (without medical intervention) for months It seemed that health professionals and counselors and even some family members wanted me to just put Anthony in an institution and let him go, cut my losses, so to speak….but I just could not do it. A mother can not just walk away from her child, I could not bear to be away from him for fear that he would need me and I would not be there. So, with the support of other SOFT members over the telephone, I managed to get our life back as close to normal as possible while still having Anthony with me everywhere I went, we attended swimming lessons for the other children, preschool activities, etc. I even coached T-Ball, with Anthony on my chest in a Snuggly carrier. We took him to meet his grandparents in Atlanta, GA and Orlando, Florida. And just tried to make the short life he had as full as possible. It was a stressful time in my life, but I did not realize just how stressful it was until Anthony passed away, on August 26th, 1989. Somehow, I knew the night before that he was slipping away. His heart rate began to fall over the last 10 hours or so, and he had fewer seizures than usual for those last few hours and he seemed to just stare at me, like he wanted to make me understand. I was so exhausted because during his short little lifetime, he had to be fed every two hours around the clock or he would lose weight and literally starve. At-home nursing care was not provided for terminal children and he did not qualify for SSI benefits or services, so that meant that I could never sleep for more than an hour and a half at a time. For a couple years after he passed I kept my membership current and was happy to share my experiences with other families needing support. I reconnected a couple of years ago, courtesy of the internet.