Annabelle Rose Kennedy, was born on November 16, 2016 and lived 86 beautiful days before dying peacefully at home surrounded by her parents and big sister on February 10, 2017. Annabelle was diagnosed at 15.5 weeks gestation with full Trisomy 18 through an amniocentesis following a routine Panorama blood screening at 12 weeks that showed a 99% chance for Trisomy 18.
Annabelle’s life was short, but full. Faced with decisions no parent should ever have to make, we chose a comfort care plan for Annabelle. We wanted Annabelle’s life, however long that may be, to be filled with only love and wanted to do anything to ensure she was comfortable and as pain free as possible during her short life. While in the hospital after birth, she was able to remain in our room without any medical intervention. She breathed on her own, learned to eat on her own, and was such a miracle. She came home at 4 days old on hospice care, and spent the next 82 days at home being loved and held for 24 hours a day. Our hospice team visited about twice a week, or more as needed, and checked vitals, weight and intake each visit.
Annabelle was born with some serious cardiac issues, the most serious being a large VSD. These cardiac issues thankfully did not affect her until around 10-11 weeks old, when she was diagnosed with Pulmonary Artery Hypertension and presumed in mild congestive heart failure.
Annabelle struggled with gaining weight and did not have a big appetite. She was born at 4lbs 8oz, and made it to 5lbs 0.5oz over 12 weeks. We worked tirelessly to get her to increase intake, but she remained content taking approximately 7-9 oz per day of a high calorie formula. She began with finger feeding, progressed to syringe feeds, followed by a special needs “Haberman feeder”, and finally a regular Dr. Brown’s bottle. We were so proud of this progress for Annabelle.
Annabelle’s health seemed to be like a rollercoaster ride. She had good days with good color, good intake, bowel movements and alertness, with other days of lethargy, paleness and lack of appetite. Prior to her last night on earth, we only experienced one apneic episode at about 5.5 weeks old. Annabelle recovered from this on her own and followed with a very sleepy and concerning day, but she went back uphill after that for a few weeks. The last 4 weeks of her life she was more pale, slowly decreased her intake and had very poor oxygen saturation numbers (65-85%). Her heart was starting to affect her and work harder, thus burning more energy (calories) and she was overall just seeming tired. Her ultimate death seemed to happen so quickly. While we were “prepared” for it as best we could be, we were surprised. We thought she would bounce back like usual. She had a little cold and stuffy nose, lost her appetite and energy, her breathing began to be very shallow and eventually she suffered from dozens of difficult apneic episodes over a 12 hour period before finally passing away peacefully in her mom’s arms.
Annabelle touched so many lives in her short time on earth. There was something about her that anyone who met her could just feel. An energy. A positivity. Love. We miss our little girl more than words can say, but we are so proud of her and all that she accomplished in her 86 miraculous, wonderful, beautiful days on earth.