“He is our Alexander the great.”
Alexander Wyatt Flores, Robertsonian Translocation, Trisomy 13, 01/10/2014-03/08/2014Albany NY
Update on 5/20/2015: We were very honored to be referred by Simon Croiser’s mother to speak on behalf of our trisomy angels at the NYS Lobby for Life day April 2015. We presented to about 200 people at the State Capitol and discussed our journey with Alexander, having had struggles from the point of diagnosis (termination scheduled without our knowledge) to when he became ill and was refused cardiology care and consultation due to his condition. The purpose of the event was to bring awareness about how important it is to allow families to dictate care, not have providers determine “futility” and deny care. It worked! The bills in NY that were slated to go to the floor allowing for futility measures was squashed by the person who drafted it.
5/9/2014: We had last updated that Alexander had a trip to the PICU where he was diagnosed with atypical SVT, treated with digoxin. He got sent home on oxygen due to pulmonary hypertension that became apparent during the same hospital stay. Alexander returned home and adjusted well to being on oxygen, and dealing with an NGT again. We used the NGT for medication administration and to bolus feed him overnight if he did not take in enough by mouth. He felt pretty well for a few days, but we had some scares with low heart rates and an apnea episode. A few days later we were in the car just running down to the hospital for a chemistry lab draw, a quick trip, we did not even bring a binky or his toys. A few minutes into the car ride, I noted that Alexander was making noises with his breathing. He suddenly became very pale and his oxygen level dropped, and he got diaphoretic on his head. I knew in that moment, and shared with my husband who was driving, that we needed to make a decision. It was clear that Alexander was suddenly critically ill. We had discussed before his birth and many times since then our intentions to give Alexander the best quality of life, ensuring comfort and to not put him through any invasive treatments that will simply prolong his existenence for a short period, or become chronic in nature. We talked for five minutes in the car, panic building, my stomach in knots, and then called the pediatric palliative care physician (on a Saturday morning at her yoga class). We agreed to meet in the ER. We arrived well ahead of the doctor, but she had called ahead and the ER team knew we were arriving. The ER team brought us to a room, and I was assigned a nurse I was lucky enough to have worked with in the past and call a friend. We spent about 4 hours in the ER with Alexander. He was immediately seen by the ER physician, but we knew his lungs were in distress, she did not have to tell us that. We made the final decision that rather than subject Alexander to another round of invasive tests, the need for emergent intubation and ventilation and sedation, that we would give him comfort measures. He received morphine through his NGT over the next few hours. We took him outside for a small walk at one point, oxygen tank in tow, where another Trisomy angel mother took our final photos. We brought him back inside and discontinued the oxygen. His father, myself, the doctor, nurse and priest spent the next half hour or so with him as he softly passed away in our arms. We were listening to music all along, which he loved. It was a very difficult decision to make. We had our beautiful perfect little guy for 57 days. 8 weeks and 1 day. Alexander passed away on March 8, 2014.
Update: Alexander is now 5 weeks old. We found out about his diagnosis after an abnormal anatomy scan and subsequent amnio at 23 weeks. I was scheduled without knowledge for a pregnancy termination by the OB. After having seen my baby on ultrasound several times, hearing his heartbeat and feeling him move, there was no way we would terminate. My pregnancy was uncomplicated and my health was not at risk. We were told the baby would not live, and probably not get to term. Our OB told us the benefit of termination was that we could start over sooner. We decided to let our baby drive the bus. At 31 weeks we did a great deal of imaging and determined he had a number of the Trisomy 13 anomalies such as cystic kidneys, ASD and VSD, and bladder extrophy. He was delivered vaginally at 39 weeks, and did get intubated due to heart rate less than 100. He did not have apneas, was placed on room air on the vent, and extubated at 36 hours old. He did spend 2 weeks in the NICU for subsequent gavage feeding needs and dressing changes on the bladder. We brought him home at 2 weeks, and have had an amazing 3 weeks with this little warrior. He has a lot of reflux symptoms, our primary concern for aspiration. He has been taking feeds all by mouth for about 10 days. He loves being held, loves looking at bright toys, loves to eat, loves music, and really likes to use his pacifier. We look forward to as long as we have with this lovely boy, and hope it is a long, quality-filled life. He is our Alexander the Great.
Update on 02/28/2014: we had our first emergency room visit and subsequent PICU admission. He has an ASD that eventually impacted his lungs, now with symptomatic pulmonary hypertension. His heart rate went to 240 and he had long bouts of v-tach: quite scary for an ICU nurse mom. The most distressing aspect was when the resident refused to call cardiology and offered only palliative care. It took 10 hours from admission to start treatment of his cardiac issue. This simply has to stop! He is now home on digoxin and oxygen, and has needed supplement feeds through an ngt again. We hope to build back up to oral feeds only. We celebrated his 7th week birthday yesterday on rare-disease day.